Excerpts: Exercise quotes from the Big Talk

[_Kim_]

The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

ETA: I added quotes from the Big Talk spin off threads as per CBS' suggestion. All of the following quotes were among the results when I searched each thread for 'exercise'. If I've snipped too much of anyone's posts, let me know and I'll edit bits back in.

I want to thank all of the articulate writers that are represented here. Special thanks to those that were able to write about their personal experiences with exercise.

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline

I don't see that elderly people have the same problems with exercise as people with ME. It misses the point that exercise is to ME what pollen is to hay fever - it causes a worsening of symptoms.

David Bell said that his patients would feel fine if they spent all their time lying down.

Exercise, often minimal, makes all the symptoms of ME worse. People often mistake the post exertional malaise of ME with the aches people get after going to the gym for the first time in months, but it is very different.

All the body will be affected, not just the part that was exercised. Indeed physical effort can often lead to mental confusion. An elderly lady has never forgot how to get home just because she was encouraged to take a walk but this happened to me.

Life events at one point meant I increased my exercising very gradually and I began to feel fitter and much better. I thought I was on my way to a cure.

Unfortunately the underlying illness was still the same but the new fitness meant I lost my cues for when to stop. One Wednesday afternoon in May 1990 after three months of getting fitter simply by walking more, my legs stopped working. I have never managed to take more than a dozen steps since and am a house bound wheelchair user.

Doctors just don't seem to appreciate this any more. The understanding has been lost with the passing of doctors like Melvin Ramsay who really understood this disease.

But the whole concept of pre-emptive rest is not something that is generally recommended by those that recommend exercise programs.

I think crash avoidance is the main thing - if you crash, any supposed "gains" can be more than lost and one can end up worse than when one started. If one exercises in the morning, one can then have unexpected demands that day and then it means you overdo it that day while if one had only done one of the two things that day, one would have been ok. It's a difficult area. But it needs to be remembered that if one is not careful, one can end up with a system where advice to exercise (and encouragement to exercise through CBT) is all that are offered to patients - this is basically what is offered to patients in the public systems in England, Belgium and the Netherlands. This is what medical and health professionals are told about - and given non-doctors can't prescribe or request tests, this is what they'll concentrate on. It causes a real mess.

[snip]I've always loved to exercise, but now it makes me, not tired, but sicker.

[snip].There is an unusual response to exercise in this illness. People need to be told about the dangers of exercise. They won't be if they are just left in no-man's land.

Just my two cents.

[snip] It's too easy to think that patients' problems are caused by deconditioning. I also notice some higher functioning patients can be a bit judgemental of more severely affected patients and can think their problems are due to deconditioning.

Very often these lower functioning patients are operating at their activity ceiling and the last thing they want to be told is that they need to exercise more.

[snip] http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

This is really a bummer. This explains why health professionals are still badgering us about exercise like several of them did to poor Dr. Yes when he was on his bed in his nursing home. They did this to him right before Christmas.

[snip] Two simple concepts...

(1) that many fellow ME/CFS patients cannot exercise at all, or would be harmed if they attempted it, and

(2) that the vast majority of doctors/ PT's will not understand (or care) about the differences between "good" and "bad" exercise/activity,

...do not seem to register in them, and therefore they do not see why those patients are directly or indirectly harmed by the continued promotion of terms like CBT and GET. It seems that some people can only understand it if they've had a "baptism by fire" themselves. This makes me really sad.

I'm currently in a nursing home with a large physical rehab component. The only member of that department who understood my situation was a former professor of physical therapy who happened to have a family member with severe ME/CFS. When I once explained to her that in the last two weeks I just seemed to hit a 'glass ceiling' she said "that 'ceiling' is your CFS". I told her about my ongoing miseries with the rest of the staff and she smirked and replied: "You aren't going to get any understanding from any of them. Nobody teaches about this disease in their schools, or if they do they teach it wrong. The only way to get them to call off a graded exercise program is to 'take a fall' or something. That scares them about liability."

I couldn't believe a health professional was suggesting "taking a fall", but her point was clear: the risk of injury from a fall is less than the risk of injury from excessive exercise for an ME/CFS patient. (But actually, I've been in a hospital situation where I accidentally did fall, and was merely picked up and forced to keep walking...).[snip]

It does not bother me when it happened, it bothers me that it keeps happening.. And what bothers me most is that if I was to (somehow) find the stamina to write a concise version of my story, some of our outspoken fellow PWC and, I'm afraid, the CAA would only see my case as an isolated, "extreme" example, rather than an indicator of what's REALLY happening to so many of us.[snip]

http://www.eurekalert.org/pub_releases/2001-12/l-poc120501.php
Peter White comments: “The predictors of a CFS after an infection differ with how CFS is defined and when it is studied, depending particularly on whether the patient also has a mood disorder. The particular virus causing the infection and the body’s immune reaction to it may play an early role, but physical deconditioning may also be important. By contrast, mood disorders are predicted by factors that predict mood disorders in general. More work is needed to understand how early post-infectious fatigue is caused by immune factors. This study also implies that CFS after infectious mononucleosis might be partially prevented or treated with an early and graded return to appropriate physical activity in order to prevent or treat physical deconditioning. It also suggests that “post-viral” mood disorders should be treated in the same way as any other mood disorder.”

[snip] Within the framework of 'pacing and relapse prevention' should be mention of 'cautious activity' (or something to this effect, rather than the term 'graded exercise'). 'Graded exercise' is a bad term because it's not exercise in the common understanding (merely activity) and it should not be graded- ie ratcheted up, unless well tolerated.

Something like this- "Cautious Activity: Encourage ME patients to be as active as possible without causing Post-Exertional Morbidity [ok I like to tweak phrases]. All or almost all patients already are active to this extent or beyond, so this typically needs to be mentioned only as a caution against overdoing it (as opposed to a caution against underdoing it)."

[snip] If one looks at studies from Fred Friedberg and the Netherlands, even when people try to use CBT to persuade patients to go for walks, people don't do any extra steps in total. Even Nancy Klimas says things on exercise I have problems with. Advice on exercise for FMS patients isn't suitable for ME/CFS patients.[snip]

Different doctors say different things - what you said isn't true for all of them and they certainly often don't make clear that some light activity e.g. 5 minutes walking, is not something everyone will be able to do.[snip] Fred Friedberg is now recommending graded activity for the quarter of patients who are the least active. For other groups, he is more nuanced. (Not sure how relevant that is to the CAA but my overall point is that I don't think the professionals necessarily get the issue).

The best version of this I've heard is that "physical activity" encompasses everything physical you do - from walking to get the mail to standing up to make a meal to walking for an errand to walking for just exercise to stretching. Doing chores around the house is a physical activity. I think I heard this from Campbell and from some of the CFS docs (forget where). For many folks, regular activities of life such as these are enough or already too much for them. Dr. Lerner in MI doesn't have people doing ANY exercise until they are able to handle their household affairs and work a 40-hour week without relapse or symptoms.

[snip] It makes absolutely no sense to tell someone who is struggling to take care of themselves to do additional meaningless activity. This is either impossible or is excruciating and will make them crash. It's also insulting and alienating.

Pacing/staying in the envelope is the key in this area. I agree totally with Dr. Lerner- no extra activity until you can work without relapse.

[snip] They're taking their "let's see how much damage we can do to the patients and still get away with it" core approach and pushing it to the maximum extreme. They're actually admitting PEM is perhaps the central feature of ME and then pushing a 'therapy' CBT that says the exact opposite in a demeaning way to patients and forcing patients to exercise. It's sickening and bizarre.

For me, heating the muscles and then stretching twice a day has been the most effective therapy I have tried. I think everyone should try this. But, when recommended it should be recommended as "stretching" not "Graded Exercise" with the footnote that if all you can do is stretch, then stretch.

For the bedbound, they should be advised under "Movement for the Bedbound" to "move their limbs a bit each day and roll to the side to prevent bed sores, and blood pooling." Any mention of GET in this or any other context (except for those who are a 7 out of 10 in fatigue, as per Dr. Lerner) is totally inappropriate.

I have quietly, without sharing, been feeling a little more able. On some warm days I have taken my dog down the block to the beach and slowly walked for up to an hour. I have even done this two days in a row. I would say that I have walked for up to an hour outside the house on as many as 7 days so far this month. That's 7 one hr walks in 25 days - usually with at least a day's rest between.

My knees are sore and, when I return from a walk, my forearms and hands go numb which is a new and very odd symptom. But, aside from this, and the occasional pounding heart and breathlessness which is not new, things were going quite well.

So eager was I to do this extremely pleasant thing - walk with my dog on the beach - that I have let my apartment slide perilously close to filthy and well within the realm of overwhelmingly confusing.

My cognition has not been good despite my increased ability to walk. In fact, my ability to think was rapidly deteriorating as I used my leg muscles and I have not been able to read or write without great difficulty. Until today, I was able to speak.

Early this morning I had to visit a dentist 3 blocks from my house for xrays - no dental work, just xrays. It was brutal. She inclined the chair too swiftly at one point and I nearly passed out. Even when raised slowly and incrementally, I could not talk or think in an upright position for several minutes but only stared blankly.

When I got home and lay on my couch/bed I was freezing and shivering no matter what I pulled over myself. I was in full blown malaise, thermostatic instability, weakness, visual disturbances and descending into what I like to call the mini coma which lasted for 5 hours. I'm still weak, shaky, cold, confused... and now I have all of that in a horribly cluttered and dirty apt.

I don't know if this is pertinent to this thread about the CAA but it seems to have become about how to determine what is too much or too little for us. I think my experience is illustrative of how difficult and fraught with consequences the activity of increasing activity is. It is necessary to pay attention to so many different aspects of energy use.

The effort of writing this makes me cry with fatigue and frustration at how hard it is to do - and I am by nature a ridiculously merry creature.

I believe it is only we who can understand the frighteningly delicate balance in which we live. There is a place for stretching... movement... exercise... but it would take a very skilled person intimately knowledgeable about ME to work with a person in order to help them to stay in balance with needs and abilities.

Traditional "rehabilitation" which I believe informs the practice of "graded exercise" is about pushing through the pain and no matter how much they say they understand that doesn't work for us I just don't see how they can understand this experience - this failure of mitochondria, or whatever it is - in order to help us maintain what is for us a healthy balance.

Somebody ought'a figure that out.

[snip]I think the 25% group maintains that this bottom quartile is homebound.

And if he means 'movement and stretching' for this group, he's got to say exactly that never graded exercise; the danger of iatrogenic morbidity is just too great in using this term.

[snip] I don't think they get it because everyone keeps saying that PEM is "Post Exertional Malaise". That doesn't sound so bad. However, my PEM, and I suspect many others with ME is horrid. I'm in Hell for 3 days following activity of any kind with horrible pain and super sickness and fatigue that leaves me flat as a pancake and dead to the world. I suffer with PEM and sometimes even have to use a wheelchair for up to 4 days in a row if I push through my symptoms and exert myself.

That aint' malaise, but that's the word that's used for it. :Retro mad:

Professor Hooper refers to post exertional muscle fatiguability and malaise which is much more accurate, as is post exertional exacerbation of symptoms. The muscle fatiguability is important because that is the phrase used in MS and RA whereas muscle fatigue is deconditioning - semantics again.

I have long felt that Post exertional malaise is a bad term. It was fine when we used it amongst ourselves, we knew what we meant, but anyone who suddenly gardens one weekend will have a week of postexertional malaise and it is obvious that nowadays the psyches are using it as if it means what happens when you exercise when deconditioned.

It is always worth going back to Ramsay's work. The original ME experts spoke about an abnormal response to exercise. The response was induced by an abnormally low level of activity, was abnormally out of proportion to the level of activity and was abnormally prolonged. It also happened when someone was not experiencing symptoms before being active.

We need to find a phrase which conveys that precisely and distinguishes it from the normal, if severe, response to exercising when you are already ill.[snip]

[snip]"Exertion" may be the best word if given the right context. It seemed irksome that it might be placed soley in the 'exercise' context ala CBT/GET. When it can be many things that 'exerts' a draw down of resources to increase morbid symptomology.

Also what is happening more in the UK and possibly in other countries (it is to an extent in Ireland) is that pressure is being put on patients to do GET and/or CBT based on GET before they will get disability payments or disability pensions from insurance companies.

Normally if an intervention (e.g. surgery) had such high rates of adverse reactions, patients would have freedom to choose not to undergo it. But because "it's only exercise" and "exercise is good for you" (these aren't exact quotes, just paraphrasing thinking) along with the "evidence" for CFS specifically, choice is being taken away.

Also patients can be seen as "non-compliant" if they don't finish the exercise programs.

[snip] Such attitudes can even influence family members.

[snip].. it's not just a matter of semantics. And I would add that similarly, there is a world of difference between 'graded' exercise and 'pacing' in the original sense -- the term 'pacing', by the way, is itself slowly being co-opted by some of those who used to push GET but they are changing the definition, as usual, in this case making it more like GET.

The core principle of GET is a gradual but fairly steady increase in activity levels (some are less hard-line about the steadiness than others, but the goal is the same). This simply discounts the reality that the vast majority of ME/CFS patients have an 'activity ceiling' beyond which they cannot continue to increase levels, and that at any time they might experience relapses or other setbacks and cannot return swiftly to the previous activity level. Further, it ignores the physiological risks associated with physical exertion in ME/CFS, which can be more insidious than a mere single-event push-crash phenomenon; rather, it appears that it can also be the result of cumulative, sustained activity over time, even if daily effects are hardly noticeable for some time.[snip]

Pacing, especially as related to 'Envelope Theory', does not call for gradual increase in activity levels. But, as I mentioned above, some spins on the pacing concept do incorporate the idea of graded increase, making it in effect a kind of "GET Lite".

As for activity, the focus should be on Envelope Theory, pacing within that context, and an emphasis on the hazards of graded exercise/activity regimens (rather than promotion of them). Then, instead of a postscript about the potential risks of exercise in more severe patients, there could be a postscript about the potential benefits of carefully monitored exercise in less severe patients. A general encouragement to remain as active as is safely possible within one's "energy envelope" at any given time in order to maximize health and avoid deconditioning would of course be appropriate (with the mention of potential risks even here for the most severely ill patients, of course).

[snip] The semantics issue is far less a problem with GET, and I have defined both it and its common mutations, pointing out the underlying theme of consistently increasing activity, which is an inherently flawed approach for most PWC. In other words, it doesn't matter how you alter the definition; the core idea will not work for many of us, and it is dangerous to promote this as any sort of therapy, let alone a 'treatment', given (1) the evidence for exercise-induced pathophysiology in ME/CFS patients, (2) the unacceptably high rate of negative responses to GET (patients reporting it actually harmful) in various surveys, (3) the poor scientific quality of many of the studies that have found favor with GET, and (4) the very high likelihood of poor interpretation or implementation of such activity programs by an unacceptable number of practitioners (as you correctly noted), despite all the warning labels in the world on CAA literature about GET.

[snip] Supportive counciling can, if the therapist and patient agree upon it, use techniques common to cognitive therapy or even CBT (which was derived from cognitive therapy), without a preconception that a patient has false illness beliefs, and without employing any GET or similar activity program (I do not consider 'pacing', as was once defined, to be a form of GET, but as I said there are significant efforts to improperly redefine it).

Lastly, I really want to make clear that CBT and GET are frequently labeled as 'treatments' in an unqualified manner that is highly confusing, especially to medical practitioners. 'Treatment' by itself suggests to many doctors a modality aimed at the underlying cause of the disease, rather than a supportive therapy aimed at reducing its overall impact on quality of life. The only sense in which the word can be applied to CBT or GET is as symptomatic treatment, i.e. therapy that eases the symptoms without addressing the basic cause of a disease. Even this would be a questionable use of the word, as CBT and GET at BEST only address a few of the symptoms of ME/CFS but cannot help many others (and indeed may worsen them, in the case of GET).

Bottom line, a huge distinction needs to be made between COPING stategies and TREATMENT. Some of the original stuff on CAA said that CBT/GET didn't TREAT all symptoms, but....yadayadayada.

In fact, it doesn't treat ANY of the symptoms, and I, for one, would like to have the whole exercise/CBT issue minimized. It is really just a distraction from real treatments for our symptoms.[snip]

From the CAA website:

CFS can be exacerbated by vigorous physical activity. A paced, graded approach to exercise and activity management is recommended to avoid overactivity and to prevent deconditioning.

Only vigorous activity exacerbates symptoms? [snip]

For those of us whose symptoms are exacerbated by very mild to barely any physical activity? Too bad! [snip]

How about the following: All chronic debilitating conditions can adversly affect the suffers psychological wellbeing. CBT is therefore as appropiate in ME as it would be in any other chronic debilitating illness. GET is as useful for ME patients as it would be for any other neurological disorder as defined by the WHO. Drs should also be aware of the potential for litigation should a patient suffer adverse effects as a result of recommending this unproven option.

[snip] I don't think everyone should be encouraged to do exercise programs. Professionals could say that if patients want to do an exercise program, this is how they could do it but that's different from recommending them for everyone.

3 Dutch studies and Fred Friedberg have now found that when people have been encouraged to go for walks, they don’t do extra steps across the day.
This means that if they are going for walks, they are cutting out other activities.

A lot of people really aren’t in a position to be cutting out activities. They might have pressure to do some sort of paid work.
Or they might have children to mind – going for a walk may mean they have less time to mind their children.
Or going for a walk might mean they have less time to put into their relationship with their partner. Or energy they might spend socialising (which might lead to finding a partner).

Or they might have other responsibilities like relatives or minding their house, cooking, shopping, etc.

So I don’t think there should be too much pressure on people to do “meaningless” walks or other activity. They should try to do a reasonable amount of activity (and could keep track of this using a pedometer) but that shouldn’t mean they should be expected to use up a good percentage of their energy going for walks or other exercise.

If they want to want to exercise, as I say, they could exercise but I don’t think it should be part of a management program that everyone should be expected to do.

[snip] This is so true for me. Life, energy usage, is a very fine juggling act.

I know that I, and what I infer from most people's posts most people here, try to use every iota of energy that I have everyday while staying within my "energy envelop" (that invisible fluxing border) to prevent PEM and/or a relapse.

It's an extremely fine balance. And if anything is added, something else has to go. And usually, what there is in my envelop isn't enough to maintain a poor version of pre-disease basics. So if a walk, of even a few steps somedays, should actually be possible, and I add it, a shower and something else from the survival list - paying bills, social contact .... will have to go.

[snip]Physio can help a lot of people who are recovering from strokes, neurological-injury and some people with neurological illnesses. No wonder they don't get it with us. We seem better, and stronger physically, than some of these people, yet would never be able to tolerate these programmes.

The difference betwen us and others is that we are not getting treatment for our underlying condition, we have a very abnormal response to exercise, we have delayed recovery from exercise, and we generally don't feel the full effect of what we do until a day or so later, so it is not necessarily obvious (especially to others) when we do something the problem that it is causing, or going to cause.

Because of this perception problem on the part of others, and the fact that they are used to programmes for people without our abnormal response to exercise, physio or GET can be a dangerous thing to promote for ME/CFS.

There is an underlying assumption in the promotion of GET (or even GET-lite) that patients are doing too little. In my experience it is extremely rare for patients to do less than they can (I cannot think of anyone I have come across that was doing less than they could). If anything the tendency is towards overdoing it. This is not because patients have a behavioural problem but because of the delayed (bad) reaction to overdoing it which makes it difficult to judge what is safe and what isn't, and the pressure people are under to do things. This pressure to do more than one can happens either because of the promotion of false ideas about our illness, including the promotion of GET, or because patients cannot get basic help from the state or friends and family (because of the lack of understanding, which is partly the result of the promotion of GET which encourages the "you just need to get out more and do more" nonsense) [snip]

 

[_Kim_]

The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

[snip] I don't think the basic concept underlying the advice needs to be that different. No matter what level one is at one should try to avoid activity which exaccerbates symptoms. The basic principles of Pacing (I mean the proper old fashioned kind) are exactly the same no matter what level one is at. Obviously the particular difficulties one is facing are different depending on situation and severity, but the basic concept is the same: try to stay within your limits; try not to push through the symptoms; vary activity according to the severity of symptoms and how you are reacting to particular activities; and if you feel really sick after doing something it may have been too much so try doing a bit less the next time. If you feel up to it, or if you think you have improved a bit, every now and again test your limits, but not too much (in case you miscalcuated the degree of improvement) and not to the extent that you aggravate symptoms.

The vast majority of patients increase naturally as they improve. They don't need to be told to do more. If anything this point needs to be emphasised more, rather than emphasising exercise.

Most patient won't need a formal programme of activity (which can turn into GET very easily, or make pacing difficult if one is paying more attention to targets and timetables than how one feels). I think programmes also give the illusion of control and the illusion of treating the condition, so it is understandably attractive to doctors and patients alike, but it doesn't mean they are effective. Some doctors suggest not increasing, or increasing much until one starts to feel a lot better, and then to test out doing things. Unfortunately it is all a bit of a guessing game at the moment without a clear understanding of the underlying pathophysiology, and without patients getting regular testing to check how they are doing or reacting to any programmes or treatments.

As others (including Tina I think) have said they could give some warnings about the problems with aerobic activity.

One important thing can be energy saving tips. I still come across ideas that are new to me so these can be surprisingly helpful. Sometimes even though some of these tips can be simple and "obvious" one may not think of them when one needs them. Patients often also have interesting tactics they have come up with to get around problems (eg. invloving parenting, schooling, housing, work-related problems).[snip]

Pacing and GET are 2 different things. An increase in activity should generally only be done, in my opinion, if one is improving. But again it shouldn't be graded as such as that gets the patient into programmes, and levels, and targets and the patient will feel under pressure to maintain a level and reluctant, to drop down levels if they feel worse.

In ME/CFS Pacing is going to involve fluctuating activity levels because of the nature of the condition. This is one of the problems with GET, or the concept of graded activity, it doesn't really fit with fluctuations in symptoms which in ME/CFS can vary a bit from day to day, or over the course of the year.

[snip] As I have said, I think there can be problems with this approach with ME/CFS - patients (and people who live with them) can have a "sensitive nose" to pieces on management issues e.g. lots of us would like the choice not to use our precious energy on exercise programs if we so choose.[snip]

[snip]Firstly and most importantly, I don't think activity programmes or exercise regimes have any place in management except as a footnote. It is not a case of which sort we should have but why have one at all.

For a while, there was quite a stir when Dr Bruno felt that ME and post polio syndrome were indistinguishable. With ME being most likely enteroviral this made complete sense. The point of both was that they got worse with activity. The answer was to limit activity to the most essential. He felt that wheelchairs, stairlifts etc should be used as a first choice so that other things could be done. If you need to stand and cook save your energy for that by not climbing stairs. Whether there is any connection with post polio syndrome, the idea seems to have been dropped as PPS became more mainstream, this system, of management struck me as being the right way to go with ME.

So a patient with ME should be told to REST as much as possible. If counselling is needed for anything it is to help patients look at their life and see how they can simplify it. As was said, lots of us have found ways to use less energy while doing the activities of living. I can do much more now because I have worked out easy ways to do things. In general this probably means LESS walking :Retro smile: Time off work, walking frames with seats or other aids, an OT assessment of your home, a bus pass; these sort of things should be given as needed, the exact opposite of what happens now.[snip]

As Orla said, a patient may exist somewhere who does too little but I have never met one either. We are all forced to live such limited lives we are champing at the bit to do something. How many of us do things which we know will make us feel bad simply because we are bored to distraction. It is people with depression who need chivvied to do things.

Secondly, we do NOT get worse simply because we have done too much. The illness has its own rhythm. What causes it I do not know. In women the hormone cycle definitely plays a part; it could be what we eat; it could be viral replication or sunshine, no one has ever looked. Many illnesses flare up and die down naturally.

The idea that "boom and bust" plays a part is overstated and is another subtle way of blaming the patient. It is used by the psyches as a way of getting out of our objections to their theories. We say "But I am not deconditioned I do quite a lot" and they can use this as a confirmation of their theories instead of the proof their theories are wrong that it actually is (Sorry found that sentence hard to do!)

Some days I feel better and can do more without it causing a crash as long as I temper it and don't go crazy. Basically I have worked out that if I have a doubt about doing something I don't do it. If I am well enough to do it I usually already am without thinking. Even after all these years I don't do what the psyches accuse us of, I'm never not doing anything because I am afraid of the results of activity.

It is being forced to do things when we don't feel well enough that causes the most problems. I am very limited, the "feeling better" is comparative. What has done for me is a continual overdoing because life demanded it. As an example a doctor treating me properly would have arranged for nursery places for my children - a friend with MS had a taxi provided to take her children to school. That should be done for people with ME so they can interact with their kids in a more meaningful way by reading a story at bedtime say rather than being too exhausted by then.

We could do with a blood test for our illness to sort out who has it and needs this sort of help, but until then we need good diagnostic advice. This means using at least the CC. It is simple to tell the ones who definitely have it, the borderline cases are always tricky, so while we want to include everyone we should not put of helping those who definitely have it because there is a doubt about borderline cases. Having a list of all the symptoms and how many have them would be useful. Derek Pheby wanted to do an epidemiological study to see what symptoms patients actually HAD and to see if there was a pattern to them. he was refused as it was deemed unnecessary......

When they are diagnosed there should be a good effort made to minimise their energy usage to within their "envelope" to prevent any secondary damage and to slow the disease progression if at all possible. This might even lead to recovery as recovery is most possible in the first few years [snip]

The recommendation of "push beyond the fatigue to see that their symptoms are not caused by the exercise" is a clear sign they don't understand the disease. Many patients have (over)exerted themselves in the earlier stages of illness to maintain a normal life because they were told nothing was wrong with them, and ended up worse or permanently affected.

It is the beliefs, attitudes and actions of such biopsychosocialists/psychologisers which fuels the environment that encouraged or coerced people to ignore the implications of their symptoms in the first place. I'm sure the above has been said many times already, but I'd like to add my opinion it is perhaps their ignorance and ideology which is the most important “psychosocial factor” for many cases of ME and/or CFS.

I read somewhere: (1) about 50% of patients defined by CDC criteria do not experience post-exertional malaise, (2) 50% of patients defined by CDC report improvements with GET. Coincidence? I think some researchers claim their GET studies included people with substantial post-exertional symptom exacerbation, but considering they don't seem to believe the reality of it yet alone actually understand it or even require it from their patients to participate in trials, I have trouble trusting their word on the issue.

Mithriel said:"Firstly and most importantly, I don't think activity programmes or exercise regimes have any place in management except as a footnote. It is not a case of which sort we should have but why have one at all."

I have said it before, but Mithriel says it in different words, so I want to emphasize this point again.

A newsletter for polio sufferers or MS sufferers is not going to devote much, if any, space to such as GET/CBT. That any newsletter for CFIDS/ME does, I feel it is just a waste of energy, time and space.

I would really prefer an article debunking those psychobabble "studies" that claim GET/CBT are effective therapies and the only effective therapies. It looks to me like there has been a seachange (incomplete, yes) in public attitudes and understanding that this illness is biological and now would be the time to solidify that understanding.

I'd like to see the headline: CFIDS: We Know What It's Not.
Then an article saying:
We know it's not mental illness/depression or any form of "wrong thinking".
It's still a mystery as to what it IS, but we've got more clues than ever, and more interest in putting the clues together to find the answer.

[snip] ...it needs to be mentioned in any information given to doctors or new patients. We have over time figured it out. But a newly sick person will try to push through and ignorant doctors will advise gradual exercise. So it needs to be putl out in a plain explanation of just what kind of body activity a severely sick person should and shouldn't do. Without that, the ignorant doctors will advise joining a gym. [snip]

I like this, with the exception that not all neurological illnesses are characterized by PEM. So one could say "graded exercise is as useful in treating ME as it is in any other disease in which graded exercise, or any other minimal exertion, increases morbidity." CAA should just say a more concise version of this: "GET is contraindicated in treating ME/CFIDS." Period.

[snip] Once it is hinted at that some patients are phobically avoiding activity, the air of suspicion cloaks us all, whether we like it or not. Once this idea is out there at all as a serious idea, every time you see a new doctor, every time someone in authority makes a decision about your disability, housing, home help, testing or about any assistance you might apply for, they might have this niggling doubt at the back of their mind that maybe you could just do a bit more, and maybe you are just phobically avoiding activity, so maybe they are not helping you by giving you things.

There is no evidence that phobic avoidance of activity is a general problem in ME/CFS. Yes maybe you could find one in a million that fit this model to some extent (though if they have ME/CFS they still have a problem with exercise, whether they are phobic or not), but is it worth hanging the rest of us for this? This comment about phobia will only encourage and indulge the most ignorant doctors to feel that they were right all along, and it might put the idea into the heads of good doctors.

Well then that is a depression problem and not an ME/CFS one, and once the depression is dealt with they still have ME/CFS so need to be careful about not overdoing it.

No they will very likely get worse from trying to exercise, unless they are improving naturally. I have known people to try very gentle exercises when bedbound and it was an absolute fiasco. Like the rest of us, if the severe patient improves they will start to do more. They are not more severe because they are phobic but because of the nature of the illness (and I am not saying there is not the odd patient out there who couldn't manage better, but again why hang the vast majority for this?).[snip]

And the word deconditioning is thrown about far too much. Muscle wastage is almost unheard of in ME/CFS and blood clots are rare. One difference between ME/CFS patients and patients with paralysis is that ME/CFS patients are normally moving around to some extent so they avoid some of the problems typically associated with deconditioning.

There are also other ways around exercise for dealing with some potential problems in the very severe, for example using splints where necessary. But some physio's can even resist this if they think the patient needs encouragement to do exercises (I know of more than one person this has happened to. I remember reading of one case where splints were removed, and the patient ended up with a problem than they need not have had, all because the people treating the patient thought they should be excercising).

Maybe, when more is known about ME/CFS physiology physiotherapy can be more safely administered but at the moment they are basically clueless about what they are doing treatment-wise, and it is all a guessing game, and as far as I am concerned our guess is better than theirs.

[snip] Doctor education materials do not need this sort of statement. Even if there are one or two cases the average doctor is unlikely to meet one.

However, the average doctor will have all the concepts of exercise and pushing through that are the norms in our society and must be forced to see that this is not the case for us.

Yes, this would seem to be common sense, but common sense isn't very common when it comes to this subject.

All this talk of "coping" and how exercise/activity might treat symptoms has been inherited from the school of "thought" that assumes WE are what is wrong with US. That WE don't know how to behave in our own best interests, that WE somehow are totally responsible for our condition and other people's response to it/us. It is just more of the campaign to direct attention away from the biomedical facts of our lives and redirect attention, and research money, toward more wheel-spinning, directionless buzz.[snip]

In case I was misunderstood in what I meant, I didn't mean physio to administer GET because of phobic avoidance or any of that nonsense. I meant that it is possible that they might have some minor role to play in a minority of cases, but not to administer GET. Sometimes some physio (massage I think) can be useful for pain in some other conditions, though in ME/CFS they are probably more likely to cause it than help it, certainly at the moment.

Of course ME/CFS is different from things like MS that can benefit from physio, partly because of the nature of the disability itself, and partly because of the degree of exercise intolerance in ME/CFS, which most non-ME/CFS people find hard to get their head around. But I feel I cannot completely rule out a future role, in a minority of cases, but feel at the moment it is generally a dangerous route to go down. I also would not be in favour of spending money on researching physio for ME/CFS at the moment, and would prefer the money to go towards trying to understand the underlying pathophysiology. Maybe you understood this from what I said, but just in case people hadn't seen my other stuff on GET/CBT I thought I should clarify.

To be honest I think it is likely that if there is useful biomedical treatment that the whole debate will move over to biomedical treatment, and maybe all this stuff about exercise and so on will become irrelevant? Though that is unlikely to happen for a while, unfortunately.[snip]

[snip] Biomedical research now. Physical therapy later, when what is appropriate is better understood. In the meantime, listen to patients, who know as much about it as most of the "experts".

The wording in the education program needs some serious revision. A doctor reading this could assume that all bedbound/housebound patient are phobic. They could also assume that severely affected ME patients who undergo “a progressive program of stretches and range of motion activities” will be cured of their severe ME and miraculously shift into the moderately or mildly affected bracket simply by sticking to their 'stretching' routine. There is no evidence to support this idea in severely affected, Candian defined ME cohorts.

Some severely affected patients are lucky enough to improve over time. Some severely affected patients never improve no matter how determined they are or how strictly they adhere to a program of stretches. Some severely affected patients deteriorate even further after progressive “programs of stretches and range of motion activities”. The CAA shouldn't leave room for doctors to infer that ME patients can remove their severe symptoms by doing bodily activity. Bodily activity is not a cure or treatment for Canadian defined ME. I agree with Orla - it is much more accurate to suggest that at different points of the disease process, patients with ME may feel a reduction in symptoms (sometimes due to resting, or in response to immune modulating medication or out of the blue). When ME patients feel a reduction of symptoms, some are able to increase their bodily activity without relapse. Determining when to increase bodily activity should always be a patient choice not a direction imposed on them by their doctor/family/insurer. For some unlucky patients any increase in activity causes an unbearable increase in symptoms and this cause and effect never changes - they never experience a lessening of symptoms and are therefore never able to attempt an increase in activity.

I think it's also important to note that patients are highly motivated to increase their activity when able. Who wants to have someone else brush your teeth or dress you when you're in your 20s or 30s? Who wants to watch a parent or spouse run themselves ragged trying to provide 24 hour care? Implying that severely affected patients remain severely affected due to a phobia rather than the actual disease itself is unhelpful. [snip]

[snip] One small example is the use of 'most' and 'can' here:

The use of 'most' implies that some 'CFS' patients can 'tolerate traditional exercise routines aimed at optimizing aerobic capacity.' Optimizing aerobic capacity for me prior to my onset 7 years ago would mean running about four miles a day. Do you know any ME patients who can run everyday?

The use of 'can' gives the impression that a 'vigorous' aerobic training regimen might cause 'malaise'. This is misleading because we know vigorous exercise will always cause PEM.

This passage should instead read: "ME/CFIDS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise provokes postexertional morbidity."

Just leave out all the inappropriate "most's", "can's" and "may's". All the inaccurate hedging hurts us.

This may seem minor to some people, but if you add up all these misleading statements in each paper, it sums up to leaving the reader with a sense that the disease is less serious than it really is and that there is much more uncertainty to the science than there really is.

I just couldn't resist sharing something I found when I googled "kinesiophobia". You can test yourself for it!

The psychometric testing used to determine whether or not you have IT is the Tampa Scale for Kinesiophobia (TSK). Trouble is, that test is for pain patients, and measures avoidance behavior due to fear of pain. So, in the only CFS study I could (easily) find that supposedly found kinesiophobia in CFS patients, the researchers brilliantly adapted the test to CFS by removing the word "pain" and replacing it with "symptoms". (They used a Dutch version of the TSK, btw).

And here it is! Simply rate your response to each question below on a scale of 1 to 4:
1 = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree

-------------
1. I am afraid that I might injure myself if I exercise.

2. If I were to try to overcome it, my symptoms would increase.

3. My body is telling me I have something dangerously wrong.

*4. My symptoms would probably be relieved if I were to exercise.

5. People are not taking my medical condition seriously enough.

6. My illness has put my body at risk for the rest of my life.

7. My symptoms always mean I have harmed my body.

*8. Just because something aggravates my symptoms does not
mean it is dangerous.

9. I am afraid that I might injure myself accidentally.

10. Simply being careful that I do not make any unnecessary
movements is the safest thing I can do to prevent my symptoms
from worsening.

11. I would not have this many symptoms if there was not
something potentially dangerous going on in my body.

*12. Although I have many symptoms, I would be better off
if I were physically active.

13. My symptoms let me know when to stop exercising so
that I do not harm myself.

14. It is really not safe for a person with a condition like
mine to be physically active.

15. I cannot do all the things normal people do because it is
too easy for me to get injured.

*16. Even though something is aggravating my symptoms, I
do not think it is actually dangerous.

17. I should not have to exercise when I am experiencing
symptoms.
------------------

Now - tricky! - reverse your scores for questions 4, 8, 12, and 16.. meaning 1 becomes 4 and vice versa, 2 becomes 3 and vice versa.

Lastly, add up the scores, and you're done!

Total scores can range between 17 and 68; the higher the score, the higher your degree of kinesiophobia! "A total score greater than 37 indicates high fear of movement."[snip]

[snip]If it was generally accepted by society that exercise wasn't the answer, what they say could be a useful contribution to the debate.

But I fear, it often just ends up as doctors and others feeling exercise is a big part of the answer but patients may have to play around with it till they find the way that will give them improvements.

And of course, it's not generally accepted that exercise can be dangerous and/or patients might simply want to use their energy in other ways.

[snip] At the time, I was searching for and printing articles on excercise. Why? Because my specialist of 7 years, whose name has been used repeatedly in the last several posts, told me at every visit I needed to exercise, and whose first question seemed to be are you exercising? We would have the same conversation every time. I would say, I'm keeping up a home. I was told that isn't exercise. I knew he was wrong.

Thankfully Staci Stevens helped find the answers I needed. Unless you've gone through her protocol, please don't judge her. She's on our side.

Secondly, during the CAA Spark the Awareness campaign, I was asked to interview with a small-time news magazine. The writer was genuinely sincere, and I want you to know what a thrill it was to speak freely and openly about CFS and the impact on my life. I wanted the audience to know of the devastation. The photographer took two pictures: I was sitting with feet up, holding my dog, and in the second one, I was lying on the bed with my eye mask on. Clearly it was during the day because sunlight come through the window. It was the photographer's idea to juxtapose the two. It's probably still on their website. There was an incredible amount of work for that campaign. They sought out the potential media and needed to match the right person. The CAA is indispensible in my mind.

Lastly, kinesiophobia. I had to look that one up. I don't like feeling like I am dying. Or walking death. So I stay within my boundaries in the confines of my home with rest and pacing. Again, I don't like that dying feeling and will do anything to avoid it. If that's kinesiophobia, then so be it. I have it.

You ask are ME/CFS patients human beings.

The same sort of question can be asked about doctors - are they human beings?

They can be influenced by all sorts of factors and thinking patterns.
If they think patients should do an exercise program but a patient doesn't want to, they can label that response in their head as kinesiophobia.

It doesn't mean that is necessarily a good term for the patient's response.

[snip] I went to lots of physiotherapy and did stretches for a long time for a tight hamstring. Didn't make any difference. My muscles behave oddly after ME/CFS and I know others do too.

I don't think one can extrapolate from what can work for other conditions which is exactly the problem we have with physical therapists and others with regard to exercise.

There is no research evidence for those interventions (stretching, etc) for the severely affected - the reasons for tightness in ME/CFS may be different to other conditions e.g. mitochondrial problems.

The Lights have said things to the effect that exercise is good for patients. Don't know where they picked it up (could have have been LB) but if LB was stronger on exercise I would have hoped she would have challenged them a bit (maybe they have changed their tune in more recent times?)

As I said earlier in the thread, patients have limited energy and can have more pressing uses for their energy. I think exercise should be seen as an optional rather than a core part of any program, which appear to be at variance with what I have seen Dr. Bateman recommend - she seems to see exercise as quite important.

If she wants to say that to the patients who sees her, that's one thing - an education program for everyone's doctor is a bit different.
Without more evidence, I think there should be major caveats in any programs for doctors and others if exercise is being recommended. The research evidence simply isn't there.[snip]

 

[_Kim_]

The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

[snip]A doctor has a very different perspective on illness than any patient. No matter how many patients, or how broad a range, Dr. Bateman has seen, it doesn't mean she (or any other CFS specialist) truly understands what her patients have been telling her. A doctor approaches the patient with a set of practical clinical guidelines that inform her/his interpretations. This is meant to maximize the effectiveness of a necessarily brief analysis and therefore of treatment. There have, however, been volumes published that debate the positives and negatives of this protocol of interaction. How much real understanding of a patient and their condition can be garnered in this way, especially if the disease is a mysterious one? How effective can patients be in reporting symptoms in such cases? How much do disease definitions affect a clinician's perceptions of a disease or group of diseases? How can one properly evaluate and - especially - generalize the effectiveness of treatments?

None of the doctors in question here are also patients. Not even moderate-to-high functioning patients. There is only so much a healthy person can understand from speaking to a patient in the unusual context of a doctor's interview and in the unnatural environment of a doctor's office. Dr. Bateman doubtless was familiar with another dimension from having a PWC as a family member. However, that does not necessarily mean she understands the disease fully, no more so than my mother or father (who was also a doctor) did.

Ultimately, there is a disconnect between physician and patient that results in an informational divide. That is where a patient advocacy group assumes great significance and responsibility. To rely on doctors exclusively for treatment advice (let alone all else) is a major mistake - especially in a disease like this one, and especially if you are only talking about a couple of doctors. If you ask Cheney or Byron Hyde, you would get a completely different, often contradictory, recommendation on exercise from the one you'd get from Bateman and Klimas (or Lapp). I don't see how, even if you restrict yourself to physician advice, you should limit that advice to one perspective at the expense of another equally (if not more) valid one.

Doctors are also human beings. Human beings are flawed. If you restrict your inputs for a set of recommendations to a few human beings, you are grossly narrowing your range of interpretation. The more the better. And, as I said, you would still be missing the vast majority of experience - patients. Doctors' experiences are not equal to or greater than the sum total of those of the patients they have seen. Very often they are unaware of or neglect, in favor of their own biases or constructs, issues of MAJOR importance to a majority of patients. The recommendations of clinicians MUST be complemented by the recommendations of patients, especially in the literature and physician training materials of a patient advocacy group.

I am shocked that any patient would argue otherwise if s/he has really experienced (1) what this disease can do, (2) the limitations of our best clinicians, and (3) the grotesque limitations of most other clinicians and our medical establishments as a whole. [snip]

I am referring to the abrupt and long-term collapse that even seemingly 'small' amounts of exercise (usually graded) can trigger, unpredictably, in PWC. It happens often enough that it cannot be regarded as anomalous - on the contrary, it must be factored in as a significant risk. That calls for closer physiological and biochemical monitoring of patients during any proposed exercise regime.

Ver]y few clinicians get to see the severely ill (e.g. bedridden or almost bedridden) patients for the simple reason that such patients cannot safely make a trip to see a doctor (especially one who may be in another state). Yet they often are under the false impression that they have. If Dr. Bateman actually encourages the 'most disabled' of her patients to try and at least do some 'stretching', she is not seeing the most disabled patients, who often cannot do even simple stretching exercises. Unless she is aware of this fact, she is not qualified to generalize about the needs and treatment of severely ill patients. To hear from a clinician who appears to be, turn to Dr. Hyde, Dr. Cheney, or (perhaps) Dr. Peterson.[snip]

Yes. But I think even higher functioning patients should be free to not have to do an exercise program - maybe that is covered in what you say, it's a little unclear.[snip]

It is not necessarily easy to get clinicans to not recommend exercise programs if that's what they tend to do with their patients.

I agree that the word exercise and all that it infers needs to be dropped from any advice.

I'm also well aware that there are days when the activities of daily living are sometimes too much, even for higher functioning patients. The potential to exacerbate permanent damage by overdoing it is simply not worth it. Did I mention that I haven't shaved or showered today (months ago that it might have been a week or longer - I simply couldn't manage it without a significant exacerbation of symptoms)?

[snip]She thinks that's the greatest exercise (or let's say activity) related risk for people with CFS? Unless that's been somehow taken out of context, she is badly mistaken, as you know from your own frightening experience! The greatest risk is dysfunction or damage - temporary or permanent - that results in long term disablement (or worse).

I bring this up because I was surprised you did not see how misleading that statement is to other physicians (or to patients), when there should be a warning label in its place... and I also bring it up because this is a perfect example of what is wrong with CAA literature on exercise/activity, etc... It is out of touch with reality - often dangerously so.

-------------------------

On an unrelated note, at my worst I had to go months without bathing (even with full assistance), and I have spoken to or read about many severely ill PWC who have had the same experience. (Thankfully that's not the situation now, as I have improved since then, but I am well aware of the fragility of my condition.) I bring this up not to compete with anyone (what an honor to THAT title), but to point out the following:
There is a level and PREVALENCE of severity of this illness that many of our most well-known doctors and the CAA seem totally unaware of.

I do agree that the potential for permanent damage and even death is by far the most serious risk of exercise or inappropriate activity.

I know that my own experience has included a sudden dramatic decline that I simply never imagined possible. It was clearly life threatening and it came after a period of ignoring physical signs that I was overdoing it. Still, I know that things could have been far worse. I don't know that I can imagine what far worse would actually feel like but I know my experience has been far from the worse possible case.

Dr Yes, I agree with you completely.

What do you see as the greatest exercise-related risk for people with CFS?
Bateman: The greatest risk is a patient getting discouraged and falling away from all forms of exercise. I also think some patients can develop more chronic pain or other symptoms from forcing exercise when they shouldnt. I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.

When I read this I was horrified. In a lot of ways the 108 pages of this thread can be summed up in the different reactions to that quote. I don't feel this particular doctor is against us but a patient organisation should have seen it, saw the danger and corrected her. That is what an organisation of patients is FOR; to help doctors of goodwill who have missed an important point.

To claim that patients are human and so some will have this problem is disingenuous. Some people who are diagnosed with diabetes may cut out so much food they will become anorexic but advise on how to treat that is not given priority in the list of things for doctors to do. If it must be mentioned, as has been said before many times, it should be with lots of warnings surrounding it of the dangers of mistaking an appropriate avoidance of something dangerous as an irrational act.

Forums, particularly this one, are giving the severely disabled a voice they have been denied - local groups for instance are made up of the ones who can physically get there - so it should come as no surprise that there are long threads like this which have disagreements. Our outlook on how this disease affects people is bound to be more extreme and more wary. Someone who is in a wheelchair because of an accident at a street crossing is going to be more vocal about the dangers it presents than officials who look at it on a map.

I am especially against all these things which advocate exercise without strong warinings because I have not walked more than a few steps since I over did walking in 1990. We are not arguing from a philosophical viewpoint, we are living with the consequences. I do not want anyone else to endure my life. I put a brave face on it, I look on the bright side, I am grateful I am not worse, but I never pushed my grandson's pram, never took him to the park, have never done so much.[snip]

This is baloney. It is giving the impression that the severely affected will be able to do more with a graded exercise/activity program. There's no evidence for this - they are most likely doing all they can.

Evidence...schmevidence! Who needs evidence!

You're right, they are most likely doing all they can, and so are the rest of us. The whole exercise/activity debate is full of holes, a diversion from actual treatments for real symptoms. It's inherited from the psychobabblers who claim that being "deconditioned" is the source of all our problems, a "theory" that has been totally disproven, but still has legs and listeners, in the form of those who WANT to believe it despite the evidence.

[snip] Even the sympathetic ones can be somewhat clueless, as is evidenced by some of the false, misleading, and frankly ridiculous statements on exercise.

There is no indication that people can just do more after finding their "baseline" (which in effect varies). This is the view of the CBT/GET school. Just because it sounds like a nice theory, doesn't mean it works - doctors shouldn't be given the impression that it will work.

[snip] This is the core issue that many agreed to: that balancing activities and energy expenditure in people's lives should be what everyone should try to do. If people are in a position where they want to, they could be given very CFS-specific exercise strategies they could do within this. But people should be free not to use up their energy on exercise if they don't want to. That doesn't mean they should necessarily do nothing - people should do up to what they feel capable of. But "doing up to what one feels capable of" should include any activity rather than specifically exercise.

Specific exercise strategies should be seen as an experimental drug rather than having a position that they have been shown to work just because they might work for other conditions or individual professionals believe they might work.

[snip] One of my "aha" moments was when you wrote something to the effect that most of us are using every iota of energy we have just to try to maintain our functioning in the world while trying to avoid over-doing. If exercise is added to this extremely fine-balancing act, then something else has to go.[snip]

Deconditioning is generally much less of a risk than making the ME/CFS worse through pushing exercise programmes. Ironically, it seems to be often the fear of deconditioning (by doctors) and the attempts to prevent what they see as the danger of deconditioning, that makes the doctors push exercise, which in turn often leads to patients becoming worse, and so makes them less active and increases their chances of serious complications from lack of mobility. There is a very twisted irony to this situation, that most doctors are oblivious to.

(I feel the term deconditioning is thrown about a lot by doctors and others without it being defined. It seems to be a very ill-defined concept, sometimes used to mean "proper" deconditioning, what you would expect someone paralysed and bedbound to experience, and other times to mean unfitness, which frankly many healthy people in the western world would have)

Most of the very severe people I have come across (I have been in groups since 1998 and in internet groups about 9 or 10 years) have tried exercise programmes, or pushing themselves (as per advice), and it is this that led directly to them becoming so severe. In some cases people went from relatively mild, or high moderate mobility, to very severe, all via exercise programmes which had the expressed purpose of increasing there mobility. If a drug had this effect it would not be prescribed, or not before it was figured out who it was suitable for and when.

Exercise programmes regularly lead patients to become worse, which makes them less active. So the programmes often have the opposite effect of what they want to achieve. Yet these facts are often ignored, and proper data is not often collected on this phenomenon by the people running exercise trials (some researchers such as McCully have collected and reported some interesting data on exercise programmes and ME/CFS patients, and Leonard Jason has done some work in this area, and patient groups have collected some data).

There are some patients who can do some exercise some of the time, and might sort of manage a programme of sorts, but often at the expense of other activities. So these patients aren't necessarily doing more activity/movement on programmes, but just doing differently (and this might involve cutting out social or familiy activities, or even sometimes necessary activities such as cooking). I think most patients need to prioritise activities of daily living (e.g. self-care, housework) over exercise programmes, and will often not be able to do both properly.

[snip]It is unusual for ME/CFS patients to get severe muscle wastage (even if they are very severe). This is probably because unlike paralysed patients, for example, they are moving around a bit, even in the bed. Blood clots are also unusual.

I couldn't even do stretching exercises so it is unrealistic to expect a bedbound patient to do them. People who are bedbound need to save energy for being able to wash, go to the toilet and the like. Often the normal activities of daily living are enough to stop muscle wastage and the like so it is unnecessary, and often counterproductive, to add an exercise programme. If a patient is already as active as they can be, which is normally the case, then suggesting doing more is a bad idea. The more severe a person is the less activity they can do before they reach their limit.

As for passive physio, I am afraid that that may not be suitable either for many as I know someone who did this and it make them really sick, but it is possible that it may be useful in some limited cases, but if the patient feels worse on it they should stop. I think that there is a general problem with physios in that most will have no concept of how bad the exercise intolerance can be, even in less severe cases.

Even people with ME/CFS, who can exercise a bit , can still have unusual problems with activities, which many doctors or physios won't understand. Even when I had a very good phase with the ME/CFS, I still had the sort of typical ME/CFS exercise intolerance that I am sure most physios would find unuusal. So I could go for a walk, but I found things like scrubbing, lifting my hands over my head, and so on extremely difficult.

If xmrv truly has such an affinity for stress hormones, it seems graded exercise of any sort for xmrv+ pwc's would be fruitless and damaging without first putting the retro virus down. I'm really eager to see what comes of the Light study now that they have added xmrv to the mix. It seems a good possibility that xmrv is the variable differentiating those who can and cannot benefit from some amount of GET. For myself, it's not only aerobic exercise that will set off the PEM......I will get it from stretching as well. But at least with stretching, I can build up some endurance to do more....not so with other forms of stress (especially aerobic) regardless of how cautious I am. We all know that we need to do as much as we can because de-conditioning can cause problems as well. But maybe for some of us, any amount is hazardous. That's surely how it feels to me.

My take is a bit different. We know next to nothing about this disease, least of all about the patients who are severely affected. When a doctor is going in blind like that, being prescriptive about what these patients should do or can do is potentially dangerous.

I agree with Orla. The consequences of being too active seem to be the bigger danger for this severely affected group.

Much as I'd like this to be the case, it doesn't reflect my experience or the experience of other patients. The ability to increase exercise follows on from a reduction in symptoms. Increased exercise/stretching in itself does not cure or treat severe ME. At different points of the disease process, people may feel a reduction in symptoms and consequently are able to move their limbs/sit up/feed themselves/brush their teeth etc. People with severe ME are normal people with families, friends, careers or unfinished study. They are highly motivated to regain their independence and functioning. When symptoms allow them to increase their activity, they do.

There are some things in these posts that were really eye-opening to me. I didn't know that some patients can't even do passive activity.[snip]

Now for me, the lesson that graded exercise is poison is getting ingrained even further by Orla's wisdom and experience. From the fact she has met so many severely disabled patients and they got that way from graded exercise; from our doctors!

I am rambling here because it's late, but my point is that we can't doubt ourselves. If some doctor or article or the CDC or even our own patient organization (which is supposed to be protecting us) says any patient should be told to exercise ever again, I am just going to say "Bull Sh!t!"

When it is time for exercise or activity the patient will know. Her body will tell her. I have felt before that it was the right time to go for walks; I did and I think it was good I did. It helped my sanity a little to get out of the house (although it certainly didn't make me any better physically.) I heat my muscles and stretch at least once a day. It always makes me feel healthier and reduces my muscle pain, so I do it. I desperately wish I had more things I could do, like stretching, that would improve my health.

All the times I have pushed myself physically because I told myself to ignore my limits or someone else told me I 'had' to push through it or I simply missed exercising, it has definitely made me worse. It takes a lot of discipline for me not to exercise as it used to be one of my biggest joys in life. But I'm glad I can muster that discipline because exercise makes me much sicker. I think this story for all of us is similar.

From now on, I am only going to listen to my body from and what I know has been proven and what makes sense based on what I know and feel- nothing else. I am going to stand up for my right and the right of all other ME patients never to be told to exercise.

If the patient needs to exercise, the patient will know; her body will tell her. Therefore, telling any patient to exercise is almost always harmful and never more helpful than noise obscuring the right message- the one from the patient's own body. Enough is enough. As someone on the DSM 5 forum said- "Zero tolerance for Bullsh!t!"

[snip] I know when I am well enough to do a bit more because I AM DOING IT. If any reluctance crosses my mind I stop. sometimes I have to do things or I want to - I went out for lunch with my family a few days ago because I really, really wanted to though I knew what it would cost and I wasn't wrong :Retro smile:

I don't think we become deconditioned or need exercises because we can do almost any movement what we can't do is repeat movements. That is one of the problems with exercise programs, they all want you to do so many repetitions and that is where the illness limits us. I don't know if any of the doctors realise that.

Nowadays, I rarely have to do activity until I reach a shut down though it happened a lot when I had young children. The only time it happened recently was when I was trying to tune in some wireless head phones to show a friend how they worked. She hadn't attached them to the TV properly so I was fiddling this know for about five minutes. I became completely paralysed, unable to move or talk.

It is not the energy expenditure that defeats us so training to lift heavier weights misses the point.

As we talk on this forum the consensus we are reaching about this illness is amazing. Now if only someone would listen.

My take is that yours is incorrect. And mine comes from actually being one of those severely disabled patients.

The physical ramifications of exerting SUCH that you BECOME immobilized are FAR MORE significant.

About the intense concerns about deconditioning expressed by you and by the CAA and certain clinicians... others have already commented accurately on this so I will just add:
Neither my father, who was a doctor (a clinical pathologist), nor two of the best known CFS specialists in New York City, nor any of the other CFS specialists I saw or spoke with, nor Fred Friedberg (@'96) ever lectured me on the dangers of deconditioning, nor the importance of gradually increasing activity, nor even of mild 'stretching'. Those CFS specialists have each seen at least as many ME/CFS patients as Dr. Bateman or Dr. Lapp. They knew deconditioning occurs, but were not concerned enough about it to try to counter it. Perhaps they thought it was not dangerous, or perhaps they thought the countermeasures would be more dangerous. Either way, if we must cite clinical sources in this matter, those were mine.[snip]

As I have said before, but I think it is important enough to emphasize, forums are giving a voice to many of the ME/CFS sufferers who were not able to participate before.

We don't need to blame the CAA or the doctors who are trying to help by promoting exercise, they may never have seen the patients who are most affected. But we are here now. We can tell them what made us so disabled, so sick.

If they do not listen now, THEN we have a right to hold them accountable.

I need to say something. I have had CFS/fibro/ myofascial pain syndrome or whatever you want to call it for 15 years now. I am still fortunate enough to have continued working through all of this. I went from almost 200 lbs on a 5'2" frame down to 130 lbs. I get plenty of exercise walking around off and on through out the day. I also stretch daily as all my muscles are tight and ropey feeling. Let me just say this, exercise does nothing for my muscle tone, feelings of well-being or my general health. I feel the same every day and I wake up every morning with my muscles as tight as they were the day before. This has been the same scenario every day for the last 15 years.

I have tried almost every treatment under the sun as I fortunately can still work and have excellent healthcare coverage (which also covers all types of alternative medicine). This includes a workout room right next to my office, where I can also walk on the treadmill or use the exercise bike. The most I have ever been able to do is 5 min. This is followed by a severe crash that can last up to 2 weeks or longer. So if exercise is the key then why don't all so called de-conditioned people have CFS or Fibro? I personally feel that the only thing that has helped over the years is changing my diet. The problem now is it is really hard to find things I can eat. When I heard that cortisol may affect XMRV and other possible hormone factors. I started doing some research. I ran across some articles on an herb and gave it a try. It helped quite a bit I think to balance my hormones at least. I also don't feel as tired as I had been feeling. It really didn't help my pain issues though.

In my expert opinion (since I have this condition) I have found that exercise has made no difference what so ever and has made me feel worse every single time I have tried it. This needs to be put to rest by those that think it helps. It does not. Now can we move on to find something that does help. Whatever that my take.

The obsession of some doctors with 'deconditioning' and exercise is just a con job, like the Oxford definition and 'abnormal illness behavior.'

The only plausible explanations to me for why doctors advise exercise is either:

(1) they are very ignorant about ME (as the vast majority of doctors are) and don't know that PEM is a hallmark of ME or they are mislead by the way ME is discussed including the term "Malaise" (I strongly prefer 'Morbidity') into thinking that it is just feeling a bit bad and sore when one has spent too many hours at the gym and that it does not worsen the disease;

(2) they are con artists like Wessely and White, etc. trying to make people think we are just malingerers or mentally ill; or

(3) they know better (a very small percentage of doctors who I would consider 'on our side') but on some level can't see that the emperor has no clothes even though his wiener is staring them in the face. To some extent even though they are on our side, perhaps under their awareness, they believe that Post-Exertional Morbidity does not exist or that we patients are overblowing the problem. To me the probability that the good guys who know better have, on some level, been taken in, is even more troubling than the outright scams run by Wessely and co-conspirators. [snip]

On a personal note, I have been surprised to see how slowly my muscles have atrophied. They were never too big since I have an endomorphic (thin/ not muscled) natural body type and had done a bit more aerobic exercise and sports than muscle gaining. But I was very fit. Even now, seven years after last setting foot inside a gym I am (thin but) fitter looking than the average person. Deconditioning is not an issue for me.

Orla the Oracle said that even for bed-bound patients deconditioning is not a real problem. "Deconditioning" is a scam. Cort, you have been brainwashed!

 

[_Kim_]

The Time for the Big Talk: How's the CAA doing? thread has included much discussion about exercise.The following is a collection of quotes from that thread that highlight how inappropriate prescribed exercise is for people with ME/CFS.

Ditto for me. I used to be good at disciplining myself to do things, now I have to discipline myself not to do things. I found this a really odd and difficult transition at first.

I am really into exercise (in spite of how I might be coming across here). I used to exercise a lot before becoming sick and loved it (and I still hope to be able to exercise again someday). The abnormal reaction to exercise is the most distinctive and characteristic feature of this illness.

Much as I would love to exercise, and would love if exercise improved us, I don't think there is any evidence that exercise improves ME/CFS. Many cannot do exercise, or should be limiting how much they do. Unfortunately it can be easy to overdo it because of the delayed bad reaction many people get.

I think a good rule of thumb is do what you can but no more. (By, what you can, I mean that which doesn't give you pay-back afterwards).

:victory: :victory: :victory: Exercise is not an ME/CFS treatment (or not a sane one) so I think on the whole that it needs to stop being treated as if it is. If people can exercise then it is probably ok to do it ok once they don't get flare-ups from it (we don't know for sure exactly what is safe, and most patients are not being monitored to check the effects of exercise biomedically).

But I think we need to get away from this idea that exercise is treatment, and that exercise will rid us of our disability. The pushing of exercise helps to propagate the notion that or we are all just lazy so and so's who sit around all day feeling sorry for ourselves, and we just need to do more. I know there are other potential long-term problems with lack of exercise, but overdoing it with activity is probably going to cause worse problems, and lead to less activity in the long-run.

I realise that some patients might find some stretches or something useful for pain or other problems, but they should still pace these activities, and they should not be forced into anything.

It is the repetitive exercises that are such a problem for us, and also what physios will be used to suggesting. I remember reading something by Dr Anne McIntyre (in the UK) and she mentioned this problem with repetitive exercises/activities (she has ME/CFS herself which is probably why she understands it).

Exactly, people don't get ME/CFS from deconditioning. There are not outbreaks amoungst deconditioned patients beause they are deconditioned. People normally get ME/CFS after infection, vaccinations and so on. It is normally people who are active and leading normal lives who get it. Most people are sudden onset, so they go from being up and about to suddenly sick. This does not fit the deconditioning theory at all.[snip]

Yes. I used to be able to walk 20-30 minutes a day a few times a week (this was ages ago when i went through a good patch, I thought I was getting better :worried and it made absolutely no difference to any of my symptoms (except I do wonder whether it made me worse in the long-run, as I got worse again, but I cannot be sure).

[snip]I, too, used to exercise just for the fun of it. At the time I first got sick I was jogging an hour on alternate weekdays after work, biking 12 miles the alternate days, backpacking and hiking in the California Redwoods on weekends, dancing like crazy for 4-5 hours most Saturday nights and being very physical every day. I loved that runner's high. If I should ever get back the capacity, I'd be a dancing fool once again. I tried to learn the Latin dances here in Nicaragua and I couldn't even last a minute!

Isn't it funny that the "its all in your head" bunch will say we are deconditioned and that causes all our symptoms, then when you tell them about your former fitness and dedication to exercise, they'll turn right around and tell you that "over doing it" is why you got sick! Damned if you did, and damned if you didn't. Wrong no matter what.

That's what's wrong with GET/CBT. It starts from the premise that the ME/CFS suffer is wrong, wrong, wrong, no matter what the facts are.

[snip] Problems from being bedbound can occur in the really severe long-term bed bound patients (e.g. osteoporisis - though Vitamin D deficiency could also be a problem here), but exercise is not necessarily the answer as these patients probaby won't be able to much/any anyway, they are probably already pushing it on their activity ceiling, and it is often exercise what caused the severity of the problem in the first place.

But I agee that the deconditioning theory of ME/CFS is a scam. The vast majority of patients are not deconditioned in any meaningful sense of the term, and yet they are still sick. Deconditioning, even where it might exist, is not THE problem for patients.

Not understanding the harsh results of crossing over that invisible line of stress intolerance is the primary reason my ME/CFS progressed from mild to severe. For many of the early years with this illness, I kept struggling to keep my life. I was on and off work/disability many times with each attempt causing another notch in the progression of the disease. This went on for years becoming more ill with each crash until I ultimately crashed into severe bedbound illness, and didn't get back up. I had been like a man in quiksand....the more I struggled, the faster I sank. Sure that was harsher than a GET exercise program, but the same mechanism causing that disease progression does the same with a gentle, calculated, and cautious GET program. My point is that from my experience, GET can and will cause disease progression. It won't just cause that acute temporary crash we all experience every time we go too far....it will also cause the disease to progress. I have tried every possible cautious attempt at improvement with GET......it doesn't work. In fact it's very dangerous. And pacing only serves to "prevent" more crashes and disease progression, it does nothing for improvement from baseline. There are pwc's who report improvements with graded exercise....Very much the opposite for me. I think we must have different diseases because for me GET is lethal. I can only conclude that anyone who disagrees with this does not understand what I consider to be real ME/CFS.

I'm another one who adored exercise and hated to give it up. I had an excellent CFS doctor and he told me to stop my daily running and thrice weekly workouts with a trainer, but I thought he was being overly cautious and did it anyway. I had to see it proven for myself--and I did--that exercise would hurt me, and now years hence, even sitting and talking with my family on Easter put me to bed for two days. I do not think those people who suffer from a milder form of CFS/ME begin to comprehend what the severe form of this illness does to people and how it absolutely destroys our bodies and our lives. We don't say that CBT/GET are harmful because we THINK they are. We KNOW they are because we've been there and done that.

It is not a flaw in my character that I KNOW exercise harms me. It is information about myself and this disease that I have earned through my own pain. So DON'T TRY TO TELL ME THAT MY EXPERIENCE IS NOT VALID because you theorize differently. I am not theorizing. I am speaking from experience.

It is dangerous balony and gives the strong impression that a lack of excercise is at the root of the problem in the first place. It is easy to latch on to a theory on a n=1 basis. There are exceptions to every rule. The scientific method eliminates concious and unconcious biases and provides objective generalisable information. Science tells us that CBT has no objective effect on any of the core symptoms of ME and that GET is positively harmful. This is contrary to the conclusions of antipositivist studies where in the biased opinion of the investigators GET and CBT are effective. They do not however define what effective actually means

[snip] If exercise/movement phobia even exists it is extremely rare, certainly in ME/CFS patients, and most doctors are unlikely to come across it. But many doctors are likely to misinterpret a rational decision to Pace, and try to stay within ones limit, as an exercise phobia. [snip]

Unfortunately I think it is likely that many doctors will conclude that it is the more severe patients who are phobic (and the CME matieral could contribute to this view). I have seen this sort of thinking from some US based doctors or clinicians who had a good knowledge of other aspects of ME/CFS, who seemed to think that if a patient wasn't doing much they were inappropriately afraid of activity. [snip]

The problem for the more severe people is that these doctors might look at how little they are doing, and so think, if exercise phobia exists, well it cannot be the more "mild" patient who have it because they are doing a reasonable amount, so therefore it must be the more severe patients. Of course many doctors/physios/therapists/clinicians will just think ALL, or most patients with ME/CFS, have a degree of abnormal activity avoidance/exercise phobia (for example the CBT School people think this).

So if a doctor buys into the phobia line they might try to inappropriately get patients (especially the severe ones) to do more. Even if the doctor doesn't really believe that the severe patient is really phobic, they might still ask the patient to try to do more, even if it should be obvious that the patient is already at their limit. One major problem for the patient is, how is a patient meant to prove that they are not phobically avoiding activity?

There is no scientific evidence of any objective benefit for either GET or CBT in patients with M.E.There is however considerable potential to do harm.The prime directive for a doctor is" first do no harm" [snip] Administering CBT and GET is contrary to the Hippocratic oath---Simple!

[snip]This will give the impression that many severe patients are not severe because of biological problems but because of phobic avoidance. Doctors are already trained to worry about deconditioning problems, and trained to see (and often promote) the benefits of exercise (to patients in general). So these points don't really need to be emphasised to them.

On top of this many will know little or nothing about ME/CFS, or have very ingrained inaccurate and prejudiced ideas about patients. Many patients will not have acess to tests to prove that they have biological problems. Specifically specialised tests to show abnormal responses to exercise are normally only done in a research setting. Even if put on a programme the vast majority of patients won't be monitored to see the biological effects exercise is having on them.

So in this context the patients, especially the severe ones, are very vulnerable to being pushed to over do it, by well meaning but ignorant doctors.

And who decided walking was a low level activity? It is not for a severe person (elsewhere they talk about walking as aerobic activity). I haven't been for a walk in years, not because I am phobically avoiding, but because the pay-back is so severe, and I need to try to save energy for the basic activities of daily living, which I struggle with every day. [snip]

This concept of activity/exercise phobia is a concept which comes directly from those who hold the psychiatric view of ME/CFS. These people view ME/CFS not as a medical condition or disease, but as a mental health and behavioural problem (consisting of an irrational fear and avoidance of exercise, deconditioning, stress, poor sleeping habits, and commonly depression/anxiety.)

These people think that we misinterpret symptoms as signs of disease [snip]

They think that because we misinterpret our symptoms as signs of disease, we inappropriarely avoid activity.

This is how it is meant to go: Because we worry too much about about our symptoms, and about what might make our symptoms worse, e.g. exercise, we end up with totally exaggerated and irrational fears about doing normal activities.

They think that our abnormal fears cause us to unnecessarily restrict our activities (called phobic avoidance/fear avoidance). In their view, this unnecessary avoidance of activity causes more symptoms and disability (because they think most of our symptoms come from deconditionig).

So basically the psychiatric view is that our abnormal illness beliefs (that is our belief that we are physically ill) causes us to engage in abnormal illness behaviours, including phobic/abnormal avoidance of activity.[snip]

I'm in day 5 of barely being able to walk. I'm using two canes I found in a closet - and can slowly shuffle a limited distance (bathroom-bedroom-kitchen)...this happened so apruptly I didn't even have time to get a wheelchair. I have extreme muscle spasticity in both legs and feet. It's incredibly painful...and incredibly frustrating. I had to cancel a neurology appt...because I couldn't walk to the car to be driven there.

Did I stand in the shower too long? Did I try to lift a clothes basket a bit too heavy? Most likely it was climbing a staircase to retrieve something...and then THIS. We never can judge what will trigger...and we can't determine how long it will last OR if we have gone too far and this is the way it will always be.

It's happened before - and it will surely happen again. What WON'T happen again is me climbing a simple staircase. If that avoidance makes me phobic....so be it - I'm phobic!

(btw...as an example, I walked two miles EVERY MORNING along the ocean for many YEARS until I got sick. Fed/cleaned/mucked out the stable, lifted hay bales for my horses, sculpted, stood for hours on end at an easel, routinely carried 25# blocks of clay around my studio - among many other activities. I WAS one strong woman!)

ETA: Added the most recent posts from this thread

It is dangerous balony and gives the strong impression that a lack of excercise is at the root of the problem in the first place. It is easy to latch on to a theory on a n=1 basis. There are exceptions to every rule.The scientific method eliminates concious and unconcious biases and provides objective generalisable information. Science tells us that CBT has no objective effect on any of the core symptoms of ME and that GET is positively harmful. This is contrary to the conclusions of antipositivist studies where in the biased opinion of the investigators GET and CBT are effective.They do not however define what effective actually means.

[snip]If exercise/movement phobia even exists it is extremely rare, certainly in ME/CFS patients, and most doctors are unlikely to come across it. But many doctors are likely to misinterpret a rational decision to Pace, and try to stay within ones limit, as an exercise phobia.[snip]

Unfortunately I think it is likely that many doctors will conclude that it is the more severe patients who are phobic (and the CME matieral could contribute to this view). I have seen this sort of thinking from some US based doctors or clinicians who had a good knowledge of other aspects of ME/CFS, who seemed to think that if a patient wasn't doing much they were inappropriately afraid of activity.[snip]

The problem for the more severe people is that these doctors might look at how little they are doing, and so think, if exercise phobia exists, well it cannot be the more "mild" patient who have it because they are doing a reasonable amount, so therefore it must be the more severe patients. Of course many doctors/physios/therapists/clinicians will just think ALL, or most patients with ME/CFS, have a degree of abnormal activity avoidance/exercise phobia (for example the CBT School people think this).

So if a doctor buys into the phobia line they might try to inappropriately get patients (especially the severe ones) to do more. Even if the doctor doesn't really believe that the severe patient is really phobic, they might still ask the patient to try to do more, even if it should be obvious that the patient is already at their limit. One major problem for the patient is, how is a patient meant to prove that they are not phobically avoiding activity?

This concept of activity/exercise phobia is a concept which comes directly from those who hold the psychiatric view of ME/CFS. These people view ME/CFS not as a medical condition or disease, but as a mental health and behavioural problem (consisting of an irrational fear and avoidance of exercise, deconditioning, stress, poor sleeping habits, and commonly depression/anxiety.)

These people think that we misinterpret symptoms as signs of disease (which they say doesn't exist) and that this is part of our disorder.[snip]

They think that because we misinterpret our symptoms as signs of disease, we inappropriately avoid activity. This is how it is meant to go: Because we worry too much about about our symptoms, and about what might make our symptoms worse, e.g. exercise, we end up with totally exaggerated and irrational fears about doing normal activities.

They think that our abnormal fears cause us to unnecessarily restrict our activities (called phobic avoidance/fear avoidance). In their view, this unnecessary avoidance of activity causes more symptoms and disability (because they think most of our symptoms come from deconditioning).

So basically the psychiatric view is that our abnormal illness beliefs (that is our belief that we are physically ill) causes us to engage in abnormal illness behaviours, including phobic/abnormal avoidance of activity.[snip]

So it doesn't really matter what is scientifically right or wrong, they don't like any concept of our illness that recognises it's biological basis and that might interfere with their treatment (CBT/GET).

I would also like to note that not ...i/CFS_-_treatments_which_are_not_worth_trying

[snip]I am saying that they are recommending pushing to a crash becasue thye do not seem to be aware of how little some people cna manage. I tried 1 minute on an a treadmill, 15 minutes lying down once a day for three days, then I crashed for three months. There is no safe level for many of us and we do not experience a worsening of symptoms before a long crash so there are no clues to stop.

As I said I do not blame the doctors but it is important for patients to educate them. Almost by definition they must be seeing the patients who are most able to add exercise into their lives, but if they tell ordinary doctors it is good it will be rolled out for everyone.

I want to know why we need exercise programs anyway. If someone feels ready to begin to recondition and wants a safe way to do so that's one thing but this continual harping on about exercise or activity helping with symptoms is so wrong.

Advice on activity for ME/CFS is simple, DO LESS. It is an illness where the symptoms are CAUSED by exercise. Doctors should be warning their patients against it.

Part of the trouble is the "fatigue" word. We always knew the cardinal symptom of ME was an abnormal response to exercise, but when the CDC brought in fatigue they brought all the baggage about building up stamina and the myth that we are people who are such couch potatoes we are making ourselves ill.

People don't need stretching exercises if they are feeling well enough to do some shopping or wash their clothes and if they are too sick to do those things they should be staying well away from exercises.

Ramsay said twenty years ago that the only use for exercise programs was to distinguish ME from other illnesses.

As people begin to feel better, they may want to know how best to add exercise into their life and it is good if some doctors are looking at what such people can do, but it is warnings the rest of us need.

I have managed to build up a little bit of stamina and I try to keep a full range of movements so I am not totally against some of what they say, but it is the context of how they say it which is giving it far to much prominence. And the doctors who are being trained will give it more prominence so it becomes dangerous.

It is better to train GPs to advise against exercise and simply to say that if they have any patients who wish to add exercise into their lives refer them to a specialist. No harm done and if anyone feels they would benefit they could find out form safe sources. Problem solved. There are many treatments that only specialists give, exercise for ME/CFS should be one of them, if people insist on having them.

[snip] One can not assume "exercise will help their muscle tone", one can not assume exercise will help "their feelings of well-being" and one can not assume "their general health".

And most importantly, one can not assume that "they can slowly increase their ability to exercise".

While if it was a person who doesn't have ME/CFS, one could generally assume that exercise would bring about such changes.[snip]

 

[CBS]

Kim,

Thanks for putting this together. I know that this might be suggesting a significantly larger task but this discussion took place on many threads along side the "How's the CAA Doing?" thread. Some (such as myself) have tended to stay away from that thread, especially for a time.

Here are some other threads that include what may be important contributions:

Self Help Strategies - NOT CBT - We need the CAA to help!

The CAA Pamphlet to Educate Doctors

CAA is Listening

CAA recommends, to me, questionable article on pacing. March 2010

And lastly, the recently revised Clinical Advice given by Dr. Montoya to his ME/CFIDS patients:

Clinical Advice

While in recovery, please do NOT overexert yourself.
• A lot of our patients report that their level of functioning feels like a rollercoaster. This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patient’s potential for a full recovery. As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash.

• We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patient’s health, and may compromise the patient’s potential for a full recovery.

• Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder). As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover. Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired. This may prevent the patient from fully regaining his or her cognitive and physical capacities. Theoretically this is how overdoing it and the subsequent crashing which results may have a long-term negative effect on health.

• Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her. Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes. We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

If you start to feel better…
• After 3-6 months of experiencing the benefit of treatment, it may be appropriate to gradually increase levels of activity. Again, it is important to ensure that this is a very gradual process. If the patient experiences a crash during this time, please reduce activity level until functioning is stable again.

• Please take it easy. Patients can slowly begin to increase their physical and cognitive undertakings in VERY small increments. Please avoid all stressful situations and drastic changes in lifestyle.

• Week by week, patients can slowly start to add small things to their daily routine. Please make sure to proceed slowly, and make sure new activities will not lead to a crash.

• We believe that the full recovery process may take between 1-2 years.

 

[_Kim_]

Good idea CBS. Here's a few quotes from the 1st link in your list.

Excerpts from: Self Help Strategies - NOT CBT - We need the CAA to help!

[snip]The insistence on CBT and GET, no matter how they are 'adapted', come directly from that psychological ideology. CBT stripped of the "false illness belief" ideology is no longer CBT; it's just psychotherapy. By clinging to the label "CBT" we inadvertently allow the somatization school legitimacy, since anyone who really knows psychology knows what CBT is based on. The insistence on graded exercise (no matter how scaled-down) is also based on a lack of understanding about ME/CFS, specifically the concept of absolute limits placed by the disease in the vast majority of cases. [snip]

Cognitive/Behavioral Therapy (CBT) and Graded Exercise Therapy (Get) could not have been more tailored made for each other. When used in the context of CFS, neither is benign.

Dr. Yes - you are absolutely right about the need to highlight the studies showing that CBT and GET are not effective, but are instead dangerous.[snip]

If you break down CBT into its two primary components the connection (and the fact that in the 'B' in CBT is really just GET) becomes clear.

The essential components of CBT are:
1) identifying distorted thinking
2) modifying beliefs
3) relating to others in different ways (hmmmmm?)
4) changing behaviors

CBT for CFS assumes - and has no place without - DISTORTED THINKING!

Those distorted thoughts lead to beliefs that MUST BE MODIFIED.

The goal of modifying your distorted beliefs IS CHANGING YOUR BEHAVIOR.

GET as an integral part of CBT is intended to show you that you are not as sick as you think you are (identifying and modifying your distorted thinking).

If your immune system is in overdrive trying to deal with excessive viral loads,etc., GET as a mechanism to overcome the belief that you are actually sick (and feeling sicker because of the added strain of physical exertion) is INSANE.[snip]

[snip] As for the behavioral aspect of CBT, I think that anyone professing to provide relief for CFS patients need to recognize that a large majority of us do too much, not too little. I'm all for getting help when you need it. CBT and it GET have been so thoroughly abused by those that cannot see the physiological basis for CFS - and advocates, in efforts to ensure that they don't make the same mistake seem to have taken a position on CBT that leaves it devoid of the very essence of Cognitive Therapy (identifying and changing distorted thinking through behavior change - the hallmark of CBT is the treatment of anxiety disorders and the classic example used in every graduate level course is that of "exposure" to the feared stimulus (maybe a snake but in our case is it work?) and after a period, the anxiety response lessens with the help of counseling/belief examination and exhaustion).[snip]

 

[_Kim_]

Exercise quotes from The-CAA-Pamphlet-to-Educate-Doctors

[snip] They say exercise exacerbates symptoms rather than relieves them. (Unfortunately, further down they promote GET and CBT and so do some of our trusted CFS specialists.)

The suggestions they make for exercise probably aren't going to work for most PWC. However, there are some of us who were or are able to benefit from exercise without experiencing PEM. I was able to exercise with mild CFS for 11 years so I would encourage a patient to try if they feel they can handle it. But when CFS is severe then exercise can be very detrimental to us and in many cases patients report that exercise or pushing themselves made their CFS go from mild to severe. [snip]

Pocinki: It's quite important for patients to be proactive in their care. Patients who sit around feeling sorry for themselves or waiting for someone to find a magic-bullet cure don't improve as a rule. Patients who continue to look for new treatments, stay optimistic about recovery and try to find new ways to cope with their illness tend to have a more positive outlook and a better prognosis.

Back that bus up!! What???! That is not true however I still think it's good to stay optimistic about recovery and try to find new ways to cope with their illness But no... sorry, this does nothing for our prognosis. I should know! And I know all of you do too.

I've been on CFS forums or read them daily since 2000. That's 9 years which qualifies me for a Doctorate in assessing CFS and the patients. I've actually had the best attitude possible since 1985 when I first came down with CEBV and started reading books and pamphlets at health food stores about CEBV and then CFS, so that's 25 years of studying CFS. My CFS is now severe and I'm mostly bedridden and I know there are millions more with CFS who are just like me.

Lapp states that Exercise is one of the few treatments that predictably improves CFS, but it must be undertaken by 'starting low and going slow'

This is totally untrue. What is true is what I stated above about exercise for some PWC. Any kind of exertion usually makes PWC much worse no matter how graded or gentle it is. Believe me, I wish this wasn't the case.

I think one reason we have our backs up is because they imply that we only know how to Push and Crash but that isn't so. Some patients might do that but the majority of us don't because we can't and also because we learn what works and what doesn't on our own. We don't like being treated as if we're too dumb to figure out how to stop relapsing.

Believe me, CFS has a mind of it's own and when it worsens on us it is not our fault. Most of us do everything we can to help our bodies perform as well as possible. For many of us NOT exercising takes tremendous willpower and massive discipline and this should be acknowledged in this pamphlet. Many of us were formerly very athletic.

Keep in mind that CFS can be very mild for some people and they can handle exercising. Just like any illness, there are levels of severity. In the more severe stages of CFS any exercise can exacerbate our symptoms and cause major relapses that last for days, weeks, and months. [snip] However, most of us are capable of figuring out how to manage CFS on our own and from support on Message Boards and that helps us save our few precious spoons for more important things like eating well and showering. [snip]

No wonder the best doctors I could find in the San Francisco Bay Area keep telling me to exercise. I keep telling them I wish I could and they look at me like I'm a liar. They also seem to think I'm exaggerating about how sick I am and how much pain I'm in. In fact, pretty much everybody in my life treats me this way and I know other PWC are being treated this way too. [snip]

They are also responsible for perpetuating myths about CFS. We're not bedridden because we're scared to move. Oh.. I just give up! [snip]

[snip] ...CFS patients are not like healthy patients, and if an exercise program is done incorrectly, it can cause a setback that lasts days, weeks, or even years. It is not to be treated lightly. [snip]

[snip] There is no correct way to do an exercise program when CFS is severe. I didn't know this before mine became severe myself but these last 10 years have taught me well. What you suggest works great for mild CFS but in the severe stages exercise is something that should not be promoted by patient groups or doctors. People with severe CFS who want to exercise on their own may attempt to do so anyway but we don't need someone "prescribing" it for us and it can cause us to relapse severely.

And due to all this untrue propaganda the public perceives us as weak and malingering. That's why our families and friends think this of us and treat us badly. That's why they keep telling us we need to exercise and that it's our own fault that we're not getting well. That's why if you're ever in a public institution like a nursing home you will be hounded by psychiatrists and exercise medical experts to work out and you will be told it's all your fault when you get worse from it.

I still get out on my bike when I can but I also know when I'm strong enough to handle that plus the horrible relapse I'll get from it. That's my choice not a treatment that's helping my CFS.[snip]

[snip] I think the bottom line is what is healthy and what can be done without setback. If a patient is confined to bed, he or she can develop serious problems such as blood clots in the legs or osteoporosis. The point is to evaluate what level the patient is at, and what (if anything) can be done to create body movement that is helpful but does not make the CFS worse.

[snip] The psychiatrist I saw told me that if I took Prozac I would be better. That's what I needed, he was sure.

One of my doctors told me that his girlfriend (or fiance) had been tired but she started jogging. Maybe jogging would work for me, too.

My endocrinologist, who was treating me for Hashimotos, kept telling me that I would be better soon by following his protocol. He was saying the same thing six years later when I was no better, but he insisted there was no such thing as chronic fatigue syndrome.

A therapist I went to see to help me "cope," kept trying to point out that my thoughts were leading me to feeling worse. I spent many sessions telling her that it was my exposure to molds, or not being able to sleep, or other circumstances, that had led to my relapses. I didn't put it together for quite awhile that she was a cognitive behavioral therapist. She worked with people who were ill. In her defense, there were at times thought patterns that were leading to exacerbation of my symptoms (still are), but it was frustrating to spend most of the therapy hour feeling defensive.

I think it is especially difficult for those of us who live alone and who have to use what little concentration we have to keep a roof over our heads and food (and how complicated is that!) in our bellies. To feel already overwhelmed just maintaining our lives and then be told to manage an incremental exercise program just feels unthinkable.

Right now, leaving my home for anything to get groceries, to go to a doctor's appointment is too much. I can't imagine adding in a weekly appointment to anyone, especially to someone who thinks that I could do yoga or maybe even swim! I think Nancy Klimas is great, but this I cannot fathom. I would like someone to help me with my weekly washing hair/shower.

I would not want any of the health care professionals that I saw before or am seeing now to be thinking that some of the advice you quoted above would be helpful for me. Even though I understand the idea of deconditioning, I need to feel like I have someone on my team who "gets" how costly any activity is and who gets how complicated it is for me to manage basic self-care.

Fortunately, I now have a doctor who does get all this. And fortunately, he has never suggested to me that I involve myself in any kind of exercise program. He is working really hard to help lower my infectious load so that my body can get just the tiniest bit of a break.

I think information targeted to doctors who treat some of the more debilitated CFS patients is needed.[snip]

[snip] Where have all the efforts of activists gone in the last two decades? Why do I see Peter White being defended by the founder of the best web forum I know of for ME/CFS? Why is he now echoing the CDC's method of excluding ME from CFS although this is the Phoenix Rising ME/CFS forum? Why are fellow sufferers on the eve of 2010 still arguing for exercise in ME/CFS, without any stated understanding for the MANY, not tiny minority, who have been destroyed again and again by attempts at even careful exercise programs, or simply do not have the energy reserves to do even the mildest exercise and still be able to bathe, or eat? Have none of you had the same awful experiences that the majority of ME/CFS patients have had with doctors and family? And if you are lucky enough not to have, have you no sense of impropriety in ignoring the majority who have? [snip]

And I cannot let you get away with saying "honestly I trust their judgment over any one patients". First of all, Teej was not speaking as one patient only. She was speaking, as I do, from around twenty years of learning how this illness has affected other patients, many of whom have been ignored even by some of the "good" doctors you mentioned. Second of all, doctors are not deities. I ought to know; I come from a medical family and was headed that way before this thing cut me down. Even the "good ones" have their dogmas, their egos, their politics/ambitions, and a certain kind of professional blindness. They tend to hear what they want to hear from their patients, and disregard anything that doesn't fit. [snip]

[snip] For many of us with severe CFS, any exertion makes us much worse. What you think is deconditioning is actually CFS taking its toll on people.[snip]

[snip] CBT and GET have harmed and killed patients.[snip]

[snip] I have been referred to a cbt/get clinic, after showing my doctor the results of a survey showing that many people who started out with moderate ME became severely disabled and bedridden, incontinent etc....he still said "well I should give it a go it can't hurt"

Firstly it would hurt my soul to be told I have false illness beliefs

Secondly I am alone and cannot afford to take the risk that a treatment such as GET would make me worse (bedridden)

[snip] I don't blame you a bit for being afraid to try GET. I am sure you know intuitively how much and when and if you should exercise. This needs to be your choice because the repercussions can be very severe and might make you completely dependent on others for the rest of your life.[snip]

[snip] 1. It unscientific to do studies that eliminate all symptoms from ME/CFS except fatigue, and then claim to have studied ME/CFS. It is flim-flam science. The CAA should be protecting pwc from this, not validating it by presenting it as real research.

2. The topic of exercise is very sensitive issue for pwc because we have had our lives trashed by bad exercise advice. But the thing is, there are writers out there who usually do not make pwc angry with their exercise advice. And the reason is because their guidelines include safety mechanisms that keep pwc inside a safety envelop. The safety envelop allows people who can exercise to find their helpful range, and prevents people who can't exercise from wrecking themselves.

3. I don't think that simply mentioning PEM in guidelines is enough. Doctors need to be given a basic understanding of energy conservation and how it fits into total daily activity.

OK, so taking out all the weasel politics and the psyches tryng to take over the US, let's look at the use of exercise as a treatment for ME/CFS.

People are saying it helped them when it was done in a careful incremental way, starting very slowly and increasing as they felt able. Now that is fine and I agree it would be wrong not to mention it in a treatment pamphlet.

The problem is that up to half the people with a diagnosis of CFS will be made worse by exercise, often severely and permanently. And no one knows who they are before the program starts.

To say that they must only do what they can is naive and will not lessen the risks much as patients are desperate to regain their life and will want to push on. Even a small over shoot can bring on a serious relapse and negate any previous good. Patients also want to please their doctor so the risk is to push, not to do too little.

I think the only conclusion is that any advice to doctors MUST be framed that while gentle exercise may be beneficial the risks are very extreme so a program must be overseen very carefully and the patients must be warned to underestimate how well they are doing and to NEVER take chances.

Research must be rigorously done on all types of patient and as many symptoms monitored as possible. Objective testing must be used, not questionnaires and patients must be warned of the risks at all times.

To simply say that an exercise program may work is unfair to doctors as well as to patients. Would a caring doctor not want to know that his treatment may lead to a bedridden life?

It is also important for doctors to be aware that increasing fitness may be mistaken for an improvement in the disease. I myself, fell victim to that. I was doing more, felt much better but I had lost the cues that told me to stop. The damage to my system was permanent and I have not walked more than a few steps for over twenty years.

Dr Cheney says that CFS patients with diastolic heart failure do not need transplants because their illness forces them to lie down so the heart muscle doesn't fail. What will happen if we exercise instead of caring for our hearts?

This is all before considering the post exertional exacerbation of symptoms in ME which should be widely taught as few physicians are aware of it.[snip]

[snip] If a doctor advocated Listen to Your Patient Therapy instead of CBT/GET they might get to know if their patient can tolerate exercise or even the activities of daily living, they might get to know what triggers a relapse, they might get to know which techiniques lead each patient to preserve the function they have and which techniques set them back months and increase the burden on their carers/families. [snip]

I'm not a moron, I understand deconditioning and I am as active as the illness will allow. A lot of the commentary forgets the concept of relapse and suggests that ME/CFS patients who exercise can just follow that 45 degree trajectory right up to full health if they keep increasing their activity in gradual increments. That is not the case for me or for many other people with ME/CFS. To deny that reality is to deny help and protection to the people who need it most.[snip]

[snip] In the UK there is a group called the 25% ME group. I mentioned them in another thread and gave bjsmith from the CAA their web address, etc. Just google 'em. They're a national charity group dedicated to providing information, outreach, and support - including financial and physical assistance - to ME patients who are housebound or bedridden. They are a small group, with nowhere near the resources of the CAA (the comparison is laughable). There is no group like that in the entire United States. The CAA rarely mentions people at this level of disability - estimated in the UK at 25% of the ME population, hence the group's name - in its literature on exercise. And it makes NO mention of those of us who can do no exercise at all - not in its literature to doctors, certainly! (And you don't have to be bedridden or housebound to be completely exercise-intolerant, as others have said here.)[snip]

No one should be destroyed by 'careful exercise' programs because they preclude exercise that increases ones symptoms.

If I understand this statement correctly, you're saying that everyone with ME/CFS can do some level of exercise? But if exercise itself is precluded by a patient's health, then, obviously, even a careful exercise program will be harmful.[snip]

[snip]

The CAA wrote: Even people with extremely limited tolerance can be helped to gradually achieve increased strength and conditioning.

No, see that's what they don't understand. CFS doesn't work like that. If this works for you as it once did for me when my CFS went into remission after the first 6 months then fine but this doesn't work as a rule for most PWC or even the same PWC that it may have at one time. This is what makes me angry. This the kind of misinformation that harms us.[snip]

We have a number of facts:
1. we have a small study from Pacific Fatigue Lab that shows exercise is (maybe) uniquely injurious to CFS patients
2. we have anecdotal evidence...that some of our fellow patients have managed, within limits, to increase their capacity for activity, even if highly circumscribed.
3. we have a lot of documentation of horrible VO2 max scores among very many of us which shows our exercise capacity to the equal of Montgomery Burns.[snip]

It is imperative that our political organization never legitimize a document that can be interpreted as abetting those who argue--despite a preponderance of evidence--that CFS patients are "fetishizing" the illness experience and, in fact, are simply de-conditioned and need to exercise.

The situation for ME and CFS is dire today and much worse than it has ever been. XMRV offers some hope but there are NO good doctors who can treat ME or CFS in the UK. The few who exist have their hands tied.

If exercise makes you feel better or gives you quality of life without relapse that is great; we all want that but we can't all get it!

I don't have to think about how much exercise I am taking, even minimal as I have learnt that if I can do it I am, if I have to think about it I am not well enough. I also make the personal decision to overexert and take the consequences if I feel it is justified.

The risk of becoming severely disabled or even dying as a result of an exercise programme is real. There is no test beforehand which can show who will suffer this - the possibility of this happening is not acknowledged by the weasels and is not explained to people attending the clinics - so I would never promote exercise as a treatment. I will not be the cause of someone spending the rest of their life like that so I will fight the promotion of exercise, especially graded exercise, as a treatment.

If you have got away with it fine, as I said many people took vioxx with no side effects, yet they banned it for everyone as they couldn't tell who would suffer.[snip]

[snip] This issue of PEM is killing us out there. We don't need any more doctor articles that present themselves as expert advice while understating its importance. The cautions about avoiding PEM need to be as prominent as a good warning label. It needs to be at the top and set off in some way to make it seem extra important. And then they need to explain about balancing exercise with all activities, be they physical or mental.[snip]

From what I can tell, physical therapy, GET, etc. as they are practiced seem to be based on a model that the patient doesn't want to exercise, and must be pushed. On the contrary, seems like every CFS patient I come into contact with has the opposite problem, and tries to do *too much* activity. That was certainly the case for me. I took me years (of push/crash) to learn that listening to my body was no longer optional for me, and I still struggle with putting it into practice consistently.

I think a helpful form of "therapy" in CFS might involve teaching people that they have to listen to their bodies, and techniques for doing so.

I had a serious relapse which took me almost a year to recover from by walking gently on a treadmill for 1 minute then lying down for 20 minutes, once a day for a week.

I still believe that any mention of exercise in the context of CFS or ME must always contain warning of the damage it can do and the fact there is no way of telling which patients it will damage.

Knowing the risk involved in any procedure, and minimising it, is at the heart of ethical medicine and should apply to people with CFS as much as to anyone else.

As the situation stands it seems like everyone from the CDC to the CAA act as if it doesn't matter that a few patients become severely ill if there are marginal improvements to some.

Doctors will skim leaflets, their eyes will fall on do more exercise which fits with the ideas they already have so will be what they remember. The risks must be there in big letters so they can't be missed even at the slightest glance.[snip]

And perhaps its time to remind ourselves an others of the simple truth that mere deconditioning and other disadvantages associated with a lack of exercise are about the least of our problems! We have the VO2 max scores of post-heart attack heart disease patients, seriously messed-up immune systems, brain damage evident on SPECT and other scans, and at least some proportion of our community carries a deadly oncogenic retrovirus!

God bless all of our fellow patients who see their lives improved by exercise within their (usually pathetic ) capacity. But at the end of the day its about as curative for real CFS patients as it would be for AIDS patients. Sure, the CAA can endorse the benefits that some undefined portion of our community have experienced due to exercise, as long as the take-home message is that it is not a cure by any stretch and that exercise, in fact, can be uniquely injurious (PEM) to CFS patients.[snip]

[snip] I do as much of the business of living as I can to keep myself as fit as possible. If I can get myself a glass of water I do it or I will tidy up a magazine. Doing these sort of things I managed to get more movement back and I think it is more useful and rewarding than specific exercise.

In the UK, the clinics are obsessed with walking for a certain amount every day. From the forums you keep hearing about people who can do nothing else except their specified walk. It would be fine if the walk was curative but as it is they are missing out on things that could add colour and enjoyment to their lives.

I do not think deconditioning is very important in ME. For the first few decades of my illness I was much fitter than the average desk worker. I walked everywhere as I found it much easier than standing waiting for a bus - I never new about orthostatic hypotension but that is obviously what it was.

I took the kids to nursery, to school and went shopping. However I was still very disabled with ME, mainly with neurological symptoms like paralysis, vision problems, severe pain and confusion. When they started talking about needing exercise I was astounded as I already did much more walking than the average person.

...that is a very good point you made about a walking plan taking up the only energy some of us are given. We need to do the best we can but many of us have to abide by the Spoon Theory. If that wasn't so and if we didn't experience a worsening of symptoms after exertion I would be for an exercise program for all of us.

I also object to the term PEM (Post Exertional Malaise). It's not malaise for many of us. For many of us it's a worsening of illness and pain symptoms that can completely cripple us. I end up in a wheelchair for days if I try to walk a bit daily for example and that's just to go to the bathroom and get food. I'm completely knackered and in terrible pain and very, very ill for days after too.

[snip] Teej, that's a great point about the term PEM. "Malaise" is yet another vague French-ish word that we've been saddled with (like "fatigue"!). I've always tried to explain to people who think you just have to "tough it out" that over-exertion can wipe out months or more of slow, painstaking progress, or cause a setback for another stretch of months or longer (and worse, start a downward spiral that can last for years). I think the term "Post-Exertional Decline" is a good one, Andrew. I'm trying to think of a more severe-sounding term, but so far no good.[snip]

[snip] We can't walk. We need help bathing and sometimes eating. We can't leave our homes for years at a time. We can't drive to the clinic and sit upright all day filling out paperwork and mood surveys for these allegedly positive CBT/GET studies. We are impoverished, unless our families support us. We use our energy fighting for services from the state, so we can survive.[snip]

If I were to attempt some externally-imposed exercise program, like the "five minutes of activity/ five minutes of rest" referred to early in the thread, I would experience a paralytic weakness so extreme that that I would be unable to get up even to use a bedside commode. What would I do then? Who would help me? Peter White? As severe patient L. said in her CFSAC video testimony, "I am virtually invisible."[snip]

My experience, like many others on this forum, taught me to stay away from exercise. After being very ill with severe ME/CFS for 10 years I was diagnosed with a brain tumor. My most severe symptom at that time was cognitive function and my IQ had dropped from 129 to 86. Following weeks of radiation I began to improve, in cognitive function, orthostatic intolerance and energy levels. After a couple of years I began to think I was the exception to the rule and I was nearly cured. Because I had moved away from my CFS specialist and only saw her once a year, I ignored the vaguely remembered warning from her months earlier and began a self imposed exercise program to drop a few pounds. It took only days before I was in the emergency room with a extreme shortness of breath and a pulse of 140 that would not come down. I lost my good health and gained all of the symptoms I had struggled with prior to my brain tumor treatment. I am no longer severely ill, as in can't lift my head from the pillow, but am moderately ill, as in confined to bed more often than not. [snip]

The stance being taken by the PWC that believe the CAA is right to teach our doctors that CBT and GET are useful treatments for CFS reminds me of the poem that goes, First they came for the gays but I wasn't gay so I didn't do anything. Then they came for the Jews but I wasn't Jewish so I didn't stand up for them. Then they came for me but there was no one left to stand up for me.[snip]

 

[_Kim_]

Exercise quotes from The-CAA-Pamphlet-to-Educate-Doctors

IIRC a survey by the 25% Severe ME group found 95% had been made worse by CBT/GET. The huge variance between this figure and the figure AfME gives for its severe respondents can tell you something! It's in keeping with AfME being an astroturf charity that promotes CBT/GET at every turn (even asking for more CBT therapists and promoting/listenign to Peter White) and lies to it's beneficieries or whatever it calls them about CBT being widely used in cancer treatment(!) AfME long ago gave up being an ME charity can became an all "chronic fatigue" charity and of course people in the UK are given "ME/CFS" as a dustbin diagnosis now, which might take on greater diagnostic relevence the less severe sufferers are.

And unlike a classic ME definition which is rarely used any more, or the Canadian, the Fukuda definition states exercise intolerance is optional.

AfME/AYME et al also make the bizarre claim that vast hordes of re-exposure trained CBT therapists are simply too imcompetent at their job rather than admit that the overwhelming negative patient response to exercise is because graded exposure to exercise is contraindicated in ME.

An American survey from years back, sorry can't recall who did it, found rest (or maybe "pacing") was very high up for positive, not sure if it included exercise. It also rated B12 highly I remember.

You also have to consider all the deviousness going on, ie. GET is sometimes not really GET but simply "rearranged" activity, sometimes, in fact often now in the UK, pacing means "GET lite" (sometimes "adaptive pacing") which is what the NICE guidelines offered and what the so-called PACE Trial is doing. This trial excludes all severely affected sufferers, as do all the GET RCTs (they usually exclude any signs of disease anyway). And some patients have a remission but in their own attribution bias can't accept it being outside their control so take the credit for it, or aren't aware remissions/fluctuations are sometimes possible.

It is hard to take any arguments for GET/CBT seriously (other than the harm promotion does of course) when ME is being lumped in with an artificially heterogenous range of illnesses and when fundamental needs are often being ignored meaning many will never know the comfort zone that is assumed to exist before even thinking of starting an exercise regime. You can't rebuild a ruined wall by changing the wallpaper, much less "toughen it up" by piling pressure on it.

I would like to know how there can be a biological possibility of alleviating the many muscl-, heart, immune, neuro, metabolic, pathologies related to exertion by simply piling on more exertion, unless you conisder them "maintained" by deconidtioning, which is the pavlovian, psychosomatic model. There is no way in hell that anywhere near 50% of people with genuine ME can benefit from GET - it's diagnostically and technically inconsistent.

Add that to the fact the worst cases get the least advocacy and medical attention and are the most vulnerable, it's unethical to give people who CAN safely exercise anywhere the same attention. Lynne Gilderdale got that way through exercise, how sick are the could-increase-exercise-but-wonts? People who cannot safely exercise are always more seriously ill than those who can.

So yes, calling failure to criticise CBT/GET "apathy" is if anything, overly generous.

I wish I had enough money to hire someone to write a book about CFS and exercise. The first chapter would talk about who should not exercise, such as people who work all day or are bedridden. But add the possibility of doing simple movement or stretching routines, if possible. But not required. And for bedridden people, simple movement routines to keep from getting blood clots, etc. Also, assisted moving routines, where someone else helps you move (if available). The second would cover how to balance activity with crash prevention, energy management, and the unpredictability of some changes in conditions. The third chapter would show set of exercises, starting with simple movements that can be done lying down. Then easy ones, moderate ones, etc. Every set of exercises would include a rest period. IOW, it would be right in the instructions for every exercise, not a sentence on the first page. Also, tips on what to watch for so you know how much you can exercise in a given day. Not sure what the next chapter would be.

[snip] I do hope everybody understands that Graded Exercise Therapy (GET) is part of CBT. Part of our supposed "wrong beliefs" about CFS is that exertion makes us worse. When you're in a CBT program, you will be expected to push through your crashes and do more than you really should and you will be expected to do some kind of exercise and to be increasing it as time goes on. You can ask Kati about that. She's in the program now and is concerned that she wouldn't get her Disability if she doesn't comply.[snip]

"The goal of CBT is to help patients cope with their illness and change perceptions and behaviors that can contribute to symptom expression."

No, I don't think this IS true. It starts from a presumption that CFS patients don't have correct "perceptions and behaviors" (otherwise, why change them?) Incorrect perceptions and behaviors? That is just another way of saying "illness beliefs".

"Contribute to symptom expression?" This is just another way of saying the symptoms are caused by what patients think (illness beliefs) and how they behave (as if they really ARE ill, despite the 'fact' that it's all in their heads).

This is just another way to not believe what patients say, which is disrespectful at the least. I don't know any CFS patients who don't do as much physically as they can, and oftentimes more than they should. Everybody I know, including myself, frequently does more than they should, just because we hope we can do it without crashing. Nobody is avoiding physical activity because of inappropriate fears of physical activity.

The whole GET/CBT thing is just one more attempt to muddy the waters regarding the physical nature of the illness. It's a distraction from the real problems. If anything needs to be said to CFS patients about physical activity, it is that to overdo it is to provoke relapse and possible damage to organs. "Physician monitored"? Get real!! Our doctors don't 'monitor' any other aspect of our treatment all that well. How much attention are they going to give to exercise? And if they are ignorant of the possible damage it can cause, how are THEY to know when too much is too much?

Why would any doctor even mention exercise to us, when, on our first visit to her/him we tell them about PEM and not being able to DO what we used to DO? The doctor would have to be crazy, cruel or a Wessely/Reeve clone, to even think about offering exercise as a treatment.

Even mentioning GET in a doctor education pamphlet is a disservice to both doctor and patient. Any patient who wants to exercise, can and can ask for guidance if they think it is needed. No CFS sufferer goes to the doctor to find out how to exercise more. We can figure that out on our own!

Apply this logic to polio, lupus, MS or AIDS. Are AIDS patients being sold GET and CBT? Treat the illness first, then we'll talk about getting back into shape!

This may sound like an odd and/or stupid question - and please understand that I'm not trying to cause conflict, discord or controversy - it is just a question that I am interested to hear responses for my own personal information. And since you are discussing GET in depth in this thread I figured I'd ask.

I've heard some people say that PEM is only present in CFS, that it is not present in other illnesses. Others disagree. It is assumed that some illnesses benefit from GET (true graded exercise that starts at 0 and each day slowly increases in duration and intensity). For example, GET is commonly recommended for FM. Is CFS the only illness where it can be strongly refuted as appropriate treatment?

Why, I ask? I went through a 4 week GET program for FM. I had struggles with it that the other participants did not seem to experience.

I've been dealing with this for a very long time and so I need to say that at least in my case, perspectives on this issue can change over time. For years I was ill but at times able to do LOW LEVEL activity without a crash. For me at that time, keeping active at a level below what would cause a crash was very frustrating but doable and up to a point, it helped me feel a bit better.

Over time that has changed (and not because of deconditioning). After sixteen years of dealing with CFS, the level of activity at which serious neural dysfunction and the real potential for irreversible neural damage (according to my CFS doc as well as my neurologist) is so low that just the simplest daily activities on the wrong day are far beyond what is safe. Some days after a significant amount of rest the amount of activity I can undertake increases SLIGHTLY but the notion that some sort of graded exercise therapy could increase my activity threshold is not only misguided, it is dangerous.[snip]

[snip] The program I went through was run in conjunction with a Rheumatology Dep't. I was the youngest participant of that particular group (my early 30's).

Every day we used a treadmill starting with a minute walk and it increased by a minute each day. We were under the supervision of a PT, monitoring our heart rate. Shortly into it, neural dysfunction describes exactly what I experienced and I couldn't reach the optimal heart rate for my age. The PT said every once in a while there was a participant who was like this, but made no note of it in my chart.

After the course we were encouraged to join a fitness program. I choose a seniors exercise class once/wk. No one in the class was under 65 except me, some were 80 - so not an intense class. It was all I could do to get through it and I had to come home immediately and spend the next 4 days in bed. I tried every wk for 7 wks to do less (pace more), even doing the whole class sitting in a chair and just lifting my arms, it still sent me straight to bed. That was a big wake-up call. I learned stretching is good, but rising my heart rate is not.

I couldn't really describe what I was experiencing (I knew nothing about CFS so didn't see a connection) and the PT, Rheumy and my GP weren't interested in hearing it anyway. I was told I just not utilizing pacing properly and I was deconditioned. I felt like I was being blamed, not that I wasn't trying hard enough necessarily but rather for not understanding the concept of pacing. CFS was never and has never been mentioned. I'm guessing that like me, the other occasional participants of that course the PT referred to who had difficulty with the GET portion, may have had both FM and CFS, but CFS is not understood by the staff.

As a side note - I'm in Canada and we have a fairly impressive CFS criteria. I fit that criteria. I've met lots of FM patients (some similar to me and some not), but only one CFS patient. I had a disability advocate help me get disability benefits who said if I had depression, saw a therapist and took anti-depressants I would be approved more easily. I don't have depression, so I wouldn't play ball so to speak. She also said if I had CFS she would not have taken my case because it's almost impossible to win with that diagnosis. That's pretty sad, we really haven't come very far.

Your experience with PT and disability are very common. I'm sorry to hear that you've had so much difficulty. Perhaps it helps a bit to know that you are far from the first CFS patient to have been accusssed of 'not doing it right' when GET (or CBT) has failed. THE FAILURE OF 'GET' IS NOT YOUR FAULT![snip]

The cardinal symptom of Myalgic encephalomyelitis is an abnormal response to exercise. Exercise is to ME what pollen is to hay fever.

I think the diagnosis of FM and CFS is all over the place. I suspect it is because severe pain is not considered a feature of CFS although it is part of ME - the myalgic part.

In ME there is a threshold of activity, which changes day to day, beyond which damage will occur.

For interest, the other cardinal symptom of ME is variability. The symptoms change hour to hour, day to day, month to month and year to year.

[snip] This is the point, CBT/GET is inappropriate, even with the included waffle words about it not being a cure and needing to be with a knowledgable practioner (find one!) it becomes the primary not a supplemental treatment. And to put it on a "Fact Sheet" is laughable, you may cite selective literature as your source documents, but the real fact is that the 'studies' were flawed and meta-analysis showed them ineffective to harmful.

How many Sofia Mirza's do there have to be? How many doctors have to say "Stop" your going to kill a patient like Dr. Cheney, have they even read about Mitochondria dysfunction and what that means?[snip]

[snip] I quoted one phrase from that, something to the effect that GET does not alleviate ALL symptoms of CFS, inferring that it alleviates SOME symptoms. So, my rhetorical question provided them an opportunity to tell me just which symptoms are alleviated by talk therapy and exercise. I already knew that it doesn't alleviate ANY of them, unless one believes that one of the symptoms of CFS is "illness beliefs" etc.[snip]

 

[_Kim_]

Exercise quotes from CAA is Listening

Because: (1) the graded exercise/activity component of most popular regimes ignores physiological reality and (2) the false illness belief ideology central to most models of CBT has so deeply embedded the belief in the clinical (and econo-medical) consciousness that most of us are less sick than we 'think' we are, that no amount of Klimases and the like will be able to rehabilitate the concept... leading to continued abuse and neglect of a majority of PWC by their government and private institutions as well as by their doctors and families. For CBT, justly or unjustly, is the major entry point for the psychosomatic school of 'thought' into the redefinition of our illness, and that is a reality and a danger you (and we all) must face.

Yes, Yes, Yes Dr, Yes:

CBT/GET were the first things suggested to me when i became ill 6+ years ago...here in SF...these approaches were suggested to me by Dr's at UCSF, CPMC, Stanford, UC Irvine, UCLA and even lil ol' Alta Bates...yes I went everywhere trying to find out why I no longer had an ounce of energy, couldn't stand for more than 5 mins, had SOB, anxiety, heart palps, all over bady pain...etc...this after 38 years of a highly active, healthy life. Each and everyone of these first 50 or so docs said i must be depressed and need to start moving around some more.

Wow, how did i suddenly become depressed for the first time in my life and it completely disabled me physically...that's the CRAZY part and how could i move around more when I could barely walk to the bathroom unassisted!?!?!? But the more I protested this diagnosis and treatment plan the more they considered me depressed, unwilling to try, combative (weakly but still) and in denial.

This is WHY the CBT/GET treatment proposals are dangerous...I WAS and still am very physically sick and the first line treatment proposed to me over and over again were psychological and excercise.

Please do not defend this approach, it is EXTREMELY insulting and dangerous to those of us whose health has been stripped away.

I will NEVER forget when the infectious disease doc at CPMC, upon release from my 1st of 5 hospitalizations in so many months, told me I needed to go to Hawaii and relax!!!!!!!!!! I had in fact just returned from Hawaii where I had finally burned and crashed from this illness.

I was bewildered by how I was treated by the medical establishment...viewed as a crazy, depressed, skinny, almost 40, white woman w/an unexplainable disease...so we'll just tell her to go to therapy, exercise more and take some anti-depressants. And in my desperation, I did in fact try all of those things...but of course none of them helped...because that is not what is wrong with me....I am physically ill....and need to be treated as such!!!!!!

one last insult to injury...my family and friends (except my super fantastic husband) started beleiving all the things the dr's said....despite knowing me my whole life...why? because those were the options presented to them and they were raised to trust and believe in the mainstream medical system.

it's been a long difficult journey and i now know so much more about my illness, but it would have been nice if the docs i saw at the start of this saga were able to offer my better advice and treatment than cbt/get!!!!!!!:Retro mad:

I would like to insert my experience of GET, at least what I thought was imposed to me via the occupational therapist. Even though they don't want to sound like it, they are focused on their own agenda, or perhaps the disability insurance's agenda. So as much as the OT was happy to let me walk 5 minutes a day the first week, I was expected to walk 8-10 minutes the week after that,regardless of my symptoms. And she didn't want to hear about my symptoms, because she was activity focused.

I told her that if I thought exercise would harm me, I wasn't willing to push myself through and do what she asked. Funny, I didn't hear from her in the last 2 weeks.

I'd say, until medical professionals are accustomed with what ME is, we will not have good services that answers our needs. And to get the professionals aware, there needs to be more research and education to all of them. Research, treatment, education. Do no harm.[snip]

I think this is a very important point. Graded Exercise means Graded Exercise and not something else. People who don't have ME/CFS do graded exercise for other medical reasons. In some cases GET for these conditions is going to mean pushing through symptoms a little, or feeling worse while doing it (even quite bad sometimes), but this is fine for them as they improve as they go on because do not have the same reaction to exercise as we do. We have an abnormal response including a delayed recovery from activity, and the delay in how bad you feel after doing something, so you don't know the full damage until afterwards (I am talking about the thing were if you feel bad while doing it you feel a million times worse the next day).

On top of this, the crowed that push GET for ME/CFS think that our "symptoms" are a mixture of our imagination (or as they would say, abnormal perceptions of normal bodily sensations), deconditioning, and stress. So they also encouage a push through, and sticking to the programme as much as possible, no matter how you feel. And there is this obsession with timetables and plans and levels, so if you get worse the whole focus is on getting back up to a previous level, which may not be possible, instead of learning to live within ones limits. This can be distressing for the patient and make them feel like a failure.

There are varying degrees of aggressiveness in their approaches depending on practitioner and patient, but it all basically boils down to the same thing. Of course sometimes the medical practitioner can bend to the reality of the situation and basically "allow" the patient to pace, but still cling to the myth that the patient is doing GET. As well as this, many patients say they are doing GET when they are really pacing, as they reduce activity levels depending on how they feel (so pacing and not GET, as it is not graded exercise).

Importantly the British Psychological Society have pointed out that "there is no evidence that GET (with or without CBT) actually increases activity levels. Where objective measures have been employed, the increments in activity levels have been negligible and no greater than that seen in controls". British Psychological Society submission to the NICE Guideline Development Group, 2006.

[Edit, I meant to say that looking at the sort of data that they are talking about, it indicates that patients are either not doing their programme when they say they are (because of pressure on them, not because they are wanting to be dishonest), or patients do their walk but cut out other activities (so they think they are doing more as they are now doing exercise, but overall they are doing less), or over the time of the study they have learnt to pace themselves better, they might be managing better but are not actually doing more physical activity overall. There is no evidence from research that a GET programme actually increases activity levels, which is pretty astonishing.

This is worth look. Information from objective date from CBT/GET studies which had been published omitting this data (handy that! the original publications made it look like the programmes were effective). "CBT did neither cause an increase in physical activity at the end of treatment...nor was an increase in physical activity associated with a reduction in fatigue...."
http://listserv.nodak.edu/cgi-bin/wa...0&F=&S=&P=7916 ]

Kati has made a very important point also. In practice when you are dealing with someone on the ground, who has in their head that GET is the way to go, there is basically no reasoning with them. There is a power imbalance in the relationship between the patient and the medical people they deal with, so this is important to take into account also, and it is easy for the patient to seem uncooperative to medical people if you don't follow their recommendations.

[snip] There is no evidence that exercise is therapeutic in ME/CFS. There is evidence (from at least one UK survey) that patients who do exercise "programmes" on their own are better off than doing it under a practitioner (my guess is is that patients are more likely to pace properly on their own, but they can be under pressure to "do better" under a practitioner. [snip]

Most people are doing all they can, and if anything a bit too much. Obviously if people start to feel better they can start to do more. I don't see any concrete evidence that it is a common phenomenon that people can just increase activity just because they would like to do more, even if their health is not improving overall. (i.e. people can do more because they are getting better, not getting better because they are doing more).[snip]

Marvellous, I didnt know infectious diseases could be managed with excercise

 

[_Kim_]

Exercise quotes from CAA recommends, to me, questionable article on pacing. March 2010

[snip] We had on this forum a patient in a nursing home unable to get out of bed with doctors and nurses around his bed yelling at him to get up an exercise. We have people who are withheld things until they can get up, like bedpans--their caregivers think, well, exactly the things this article outlines. The patients are abused, and they get sicker, because of this exact mindset. This article obviously isn't advocating this protocol for those people; however the sort of person who would stand in front a nursing home patient's bed and berate him to get up and walk is not particularly good with nuance.

[snip] All you have to do is START ADVOCATING FOR THE SICKEST PATIENTS, and stop advocating for only the healthiest patients. Instead of a tiny footnote in the end of articles that says, well yes there are some people that are bedbound and this does not apply to them- advocate for THESE people, these are the people that need your help,these are the people in desperate need of accurate information, these are the people you need to focus on, these are the people who will change public opinion about this disease. It's really that simple.

I am lucky now that I am functioning at between 20 and 30 on the bell scale (still not great) , but there have been times in the course of this illness I have been much lower than that for long stretches of time and I have to honor that experience, as I live daily with the fear that I will plunge back down into that abyss. A lot the info that CAA puts out just doesn't resonate with people who have gone through the experience of things like being unable to go to to the bathroom or eat without assistance.

[snip] GET or exercise can be not just neutral but detrimental to certain people with CFS and that for many folks, pacing or other such acitivites help manage but do not treat the illness at its root.

I used to be one of those outsiders looking in and am used to recommending exercise for people so I've been on the other side. All the training I had did not mention CFS or how to manage it and many healthcare professionals I saw in the course of this illness had no idea. Perhaps they felt more open saying 'I don't know" to me; at least they were honest. What saved me were two observant physicians that had seen a few patients like myself. They did not know what was going on but they had seen the crashes and were the ones who warned me to be careful of my activity level.

Exercise, hypnotherapy, meditation will not cure your symptoms unless you don't have MECFS and instead you have a fatiguing condition. While exercise may help preventing deconditioning, it may also cause a relapse or a crash that will set someone deeper into the disease.

Again, while viral cause is not yet confirmed, we all know there has been strong suspicion for a long time now- and honestly I don't think it is helpful to focus on meditation, GET, CBT as forms of treatments for our disease.

Oh but they ARE accusing us of creating this disease! And they are accusing us of perpetuating this disease state by not having faith that we can think our way out of it. They are offering the illusion that we have total control of this disease and if we aren't cured by positive thinking and exercise it is OUR FAULT, because there is no organic cause. This is classic snake oil. "Buy our theory and become well. If you don't get well, you didn't completely buy our theory and so it's your fault you are not cured." Circular "reasoning" at its worst. GET/CBT in CFS/ME has been thoroughly discredited, so there is no valid reason for it to be in the MARCH 2010 issue of CAAs newsletter, disclaimer or not.[snip]

I think pacing, not overdoing it and meditation are the yummy organic greens in the salad. These are great ideas and I think they work for pw/ME. I agree that stress is detrimental. We all know that stressors (whether physical, emotional, mental) are harder for pw/ME to deal with and cause PEM. As others have said here, there is good info in there, it's just that if you put it up there on the CAA website and CFIDSlink without any provisos that GET can be very harmful and that CAA disagrees that taking supplements are a way to avoid responsible exercise and healing, etc. can mislead new or uninformed patients and doctors. There is poison mixed in there- in addition to the 'signs that we're not active enough' and the implication that if we are not healing then we are not being active enough that have been cited by many people, here is a little nugget of poison.[snip]

 

[gracenote]

Thank you so much, Kim.

This is a remarkable gathering of patient experiences eloquently told. It is both heartening and heartbreaking to read. I feel honored to be a part of this remarkable group of individuals who are striving daily to live life to its fullest in the midst of such devastation. I'm also incredibly saddened that all of these carefully worded posts have been written to persuade, not an uncaring public, but the very people who should be our biggest advocates.

Thank you everyone for sharing your experiences with all of us. We at least are hearing each other.

 

[_Kim_]

Exercise quotes from Design a Brochure

[snip]
Some background: I got put in this nursing home when I contracted three serious infections in three weeks (requiring two hospitalizations) at an "Adult Home" in Queens, the last being pneumonia. Naturally those caused a lasting crash in the ME/CFS overall. The nursing home is in a very woody area and my allergies have worsened - these (incl mold allergies) seem to worsen the whole ME thing, and allergic asthma/COPD that limits what I can do physically, too.

Plus I get way too little sleep, esp. lately, due to all the racket they make here esp. from the early morning onwards. I haven't been able to try even mild physical therapy since a big crash (allergy-related) in the spring. I have been pushing to have these situations improved since January. Nada.

ANYWAY...earlier today a whole bunch of people walk into my room while I'm trying to sleep (late, of course, due to a sleep cycle shift thanks to their constant noise..): it was my "care planning team" which includes the social worker who knows zip, the physical therapy genius who thinks I'm just afraid to leave my room and want to remain sick, the dietician who I've begged for months to arrange for better food (given my GI probs) and doesn't seem to mind that she does nothing, a Recreational Therapist who thinks I can do better if "I just will it", and a couple others who can't pronounce my last name (which they think is my first name).

I was bombarded by all of 'em about the fact that I am "just staying in bed" instead of going to the gym (which is right near my room, hence a lot of the noise) and exercising. (I should mention that I had been bedridden for the last several years and only last fall had any improvement, now mostly erased). I was extremely annoyed, seeing as I'd already had this conversation with each of them separately.

When I told them that I would love to exercise, and had pushed for it myself earlier but had it cancelled by my insurance, they said: "because you weren't meeting their goals."

When I told them those goals were for a person of otherwise regular health with an injury, not a disease, they said "well, that was then, but you haven't tried again since spring."

When I told them (again) that I've had a relapse/crash in CFS since spring, and its been downhill since then, they said: "So what you're saying is 'this is as good as it gets for me, and I'm just going to stay in bed the rest of my life'?"

When I said nooo, I would like nothing better than to get out of bed, but as long as I'm in a place where I can't sleep, can't eat well, have no treatment for CFS or other symptoms, and live in a high-allergy environment, I can't improve, they said "well that's going to happen to you at any nursing home..Why don't you just try? Build yourself up gradually. The more you push, the stronger you'll become."

I told them "Chronic fatigue syndrome places absolute limits on what you can do physically at any given time; pushing beyond your limit, as I've told you all before, causes "-- then I explained PEM and relapses yet again, and told them they don't know what it's like to have CFS. Then they chorused "Oh, yes we do.. nobody here is minimizing your illness.." I also told them about how many, many people with CFS are bedridden or at least unable to exercise, not through any choice of their own. The response: "But we don't want you to end up like them! That's why we want you to push yourself! You have to try!"

At this I started to really loose my cool - which I don't know how I've been able to maintain for the last year or so - and told them that frankly it really pisses me off when people who don't understand the disease or how hard people struggle with it just assume that they know better than patients who've had it for years or decades and that those patients must not be "trying hard enough".

As it got more heated, they said "well this is going nowhere" and I got some of those exasperated-with-you looks and they turned to leave, but asked if I had any questions for them. I was too burned out by this time to say anything intelligent, but I said yes what about an aide assisting with the wheelchair. I don't know about you guys, but I haven't been able to push a wheelchair myself without severe PEM since early in ME/CFS, when I was ten times stronger than I am now - not even after PT. (Wanted to start a thread on that, actually..).

The mindless, circular response was "well, if you go exercise, we could get you strong enough!" I told them I have a doctor's note (from an outside rheumy) explaining that I need wheelchair assistance and that PT would not be be enough to allow me to do it thanks to CFS. They conferred but then announced that it would be impossible for the staff to accomodate this need. (At a nursing home!?) I said but I'm trapped in this room, then.. that can't be healthy!! No response, and then they beat a retreat, advising me to still "consider the suggestion of physical therapy."

I was briefly furious, but I'm so used to this and so worn out that I just managed to swallow it. This kind of treatment is so familiar to a lot of you, I know. For me, it's become almost daily (though not always with several people scolding you and looking at you like a self-destructive headcase at the same time... still, I've gone through much worse.)

My point is this can, and I'm sure does, happen to any ME/CFS patient who is forced into a situation or system where s/he is dependent on others for housing and other basic needs. I don't have the right word for it.. not "humiliating", though that too... But it leaves an impact, and the anger inside just builds, and I hate being angry (and I've noticed that it really is toxic!).

I'm sure I'm not the only one who's been in a situation like this; there must be others out there who find themselves broke and with no one to take care of them, and I guess they wind up in the same boat. But that is where I think our information and at least some of our advocacy is best spent -- PROPERLY educating the MAJORITY of professionals about the real ME/CFS and how they must (and must not) deal with us if we wind up in their hands.

I was wondering what to put in a brochure, teej, but this reminded me of the physical disability part of ME/CFS, and the shocking ignorance and denial that we face daily about it by people who we depend on. Simply mentioning that "some patients are bedridden" while still advocating graded exercise is ridiculous; someone has to get it through to these folks specifically what our limitations are at different levels of illness and back it up with doctor testimony and research findings.

I think we'd have to emphasize the unquestionable physical reality of the disease, the injustice and stupidity of the "malingering" label, the specific physical limitations and requirements, and a demand (no more "please, sir") that those charged with care of those with ME/CFS research the disease before they claim to know what's best for us - as surely they would do for any other disease they were new to. (Would they allow a young member of their profession to come up with therapies for a person with MS, or lupus, or HIV if he had never read about those diseases?)

Well, that's my first rant, of sorts. Actually holding back a lot, but gotta go to sleep; appointment with a crappy cardiologist tomorrow. Who keeps recommending exercise for my NMH (doesn't care about the rest). [snip]

Hello Dr Yes,

I have just read your post.........what can I say??? Except that I am appalled, heartbroken and furious at the position you are in. It's a disgrace that you should be treated like this...that any of us should be treated like this. Crazy as it may sound, we are too ill to cope with a hospital/nursing home environment. I have recently been in your position ...again. I am alone too and I dread the threat of medical attention of any kind because, in their ignorance, the medical profession from therapist to consultant try to inflict treatment regimes on me that plummet me into a severe relapse.

Once, I spent three months in a hospital ward for nursing care. The nursing staff made it very clear that they did not believe in the 'shirker's' disease. Although just about bedridden they bullied and shouted at me. They deprived me of food....if I couldn't walk to the dining room I couldn't eat. When I really pushed myself to do so, I would collapse onto the table because I couldn't sit upright. When I collapsed in the corridor the nurses just walked over me... and forbade the other patients to help me up. Oh dear. this is sounding so depressing......I'm sorry. Bad memories - must let go of them. Not good for the soul or the body.[snip]

[snip] Unfortunately I've just come off another miserable day (during which that crappy cardiologist I mentioned told me "you need to exercise..you need to push yourself harder....I don't know that you HAVE chronic fatigue syndrome", etc... Don't know what she based the latter on, but when I started to 'educate her' she cut me off and went to see another patient. Well, I'm never seeing her again...)[snip]

Yes, it does sound like CFS + Exercise is the first big topic that needs to be addressed in educational materials, huh? It's the arena where people are actually being harmed. Even in the UK, that's why people aren't complying with their so-called "treatment plan", because it is exercise-based and physically harmful. (Argh!)[snip]

 

[Jerry S]

Thank you, Kim, for collecting the invaluable writings of the most thoughtful and articulate among us. Well done.

 

[_Kim_]

More exercise quotes from Time for the Big Talk: How's the CAA doing?

[snip](1) It would do me no good whatsoever (believe me: I have been "exercising" far too much for my ME for 21 years now for having the higher level I had then that collapsed from Amsterdam's illegal city government, causally speaking, as medical specialists and doctors who treat(ed) me have written also)

(2) I don't want this so-called "strengthening and conditioning program" imposed on me, or even talked about in such limited time as a doctor and a visiting patient with ME have; I don't want ANY of this "Advise patients "; "Educate patients "; "Encourage patients " - it is all interference with my life and such possibilities, concerns, interests, risks and pains I have living in my ME-ified body since 32 years: I WANT BIO-MEDICAL TREATMENT i.e. investigation and presciption of medicines, not exercises, for I know how futile or dangerous that is, and I WANT N0 MEDICAL DOCTORS TALKING WITH ME ABOUT EXERCISE AS 'THERAPY', 'PROGRAM' OR WHAT NOT with me.

(3) Persons with ME who are not totally intellectually demented are perfectly well capable to decide at their own descretion whether they want to try to exercise and what to do, thank you very much. (It seems to me to be in the class of amygdala-therapy if that makes it clearer: OK if you think you have to, having ME and being an adult... but not something to enthuse about or recommend as 'therapeutical' for ME, for as TeejKay asked somewhere quite righly (paraphrasing from memory)

(4) You aren't going to seriously propose the inclusion of physical exercise therapy for people with cancer of the colon, are you?

(5) Every so called 'therapy' has its thus called 'therapists'; all these 'therapists' want money for giving 'therapy'; all 'therapy' that is not concerned with finding out what specifically ails a patient with ME bio-medically and trying to find effective medication for these is a loss of money and time.

(6) Playing chess significantly improves my symptoms (because I rest physically, I exercise my brain - that one really human organ that needs so much exercise - and my thoughts are directed away from my pains and problems). I think this will be so for the vast majority of persons with ME. Or for playing bridge, poker, solitaire, or computergames (say SymCity, to keep it quiet). Now shall we introduce chess (etc. ad libitum) as 'therapy', 'exercises', that needs medical discussion, investigation, payment, which doctors, therapists, psychotherapists, psychologists, are to "Advise "; "Educate"; and "Encourage patients " towards, and make money by, while pretending to treat ME?

(7) I have been saying for 21 years now, very truly also, very well-founded of MY knowledge of MY forms and manifestations of MY ME that

It may be I don't quite understand you, and I know you are by personal preference a real physical exercise person (I am not), and if physical exercising in some ways does you good - but it is for me really on the level of my playing chess against my computer, if that is not more helpful (for me, for ME, for some, for many - and I like your care of logical qualifiers and terms[snip]

I remember the doctor that diagnosed me years ago said "you should start riding a bike". I said so you mean I can actually ride a bike? I felt happy about the fact he said I could even though I felt horrible. I pushed and pushed myself to do things rather then rest. 2 weeks later is when I wound up at the hospital with my heart rate going 180. It took 3 IV shots of I'm not sure what medication to bring my heart rate down to a normal rhythm. I thought I was going to die right there by myself in the ER since I had driven myself to the hospital. They said I could have gone into cardiac arrest on the drive there.

This is why I have a problem with doctor's or whoever that suggest exercise for all. Until the cause is found for this, how can a treatment be suggested. We are all affected differently and I think we all figure out what and what doesn't help. At least I have. Sometimes the hard way.

Me too. I went on an exercise bike ,and had a seizure as a result that almost killed me!

[snip] Specific exercise programs for CFS are experimental treatments and should be recognised as such.

They make all sorts of claims e.g. exercise will help with pain, where there really isn't the published evidence (but doctors and other professionals can think there is evidence as it may be the case for healthy people).

[snip] These people think we don't have an ongoing disease but are misinterpreting normal bodily sensations as signs of disease. They think our misinterpretaton of symptoms, leads us to engage in abnormal behaviour, and they think that it is this (rather than any disease) that causes our symptoms. So to summarise, they think that our incorrect thinking and behaviour causes the continuation of symptoms.

So they don't believe us in what we say about exercise. They also decide in their own head what we are thinking, and just run with their own view of what they think we think and do (CBT-School people often have an extreme and distorted view of how we think and behave).

They want to give us CBT to change our beliefs that we have an organic condition causing a problem with exertion, so that we will stop being silly and get back to normal. That is it in a nutshell.

Notice the use of the word may (in "may reach the conclusion that it is best to avoid exercise") They don't have evidence, they are just guessing that we are behaving in a certain way, and they go on to base their whole ideology and treatment on their own abstract intellectual speculation.

Patients tend to only avoid the exertion that causes a bad pay-back. So they might do a bit of exercise, or some sort of exertion, but try to stay within their limits. Many patients with ME/CFS do exercise but within their limit. Others exercise some of the time, when they can. Relapsing/bad flare-ups from over-exertion is a common problem. This problem would not exist if patients were avoiding these activities.

There is no evidence that ME/CFS patients abnormally avoid activity, never mind the " inappropriately avoid all activity" that the CME would have us believe.[snip]

[snip]People can keep track of activity with pedometers - they don't necessarily have to do extra exercise to do a reasonable amount. Simple things like going shopping can involve quite a lot of steps. Work may involve a certain amount of activity.

In such a circumstance, exercise is unlikely to benefit you anymore than the rest of the population. But done incorrectly has bigger risks. Exercise doesn't need to be a central part of an education program for doctors.

You are making two points some of us have been making:
(i) such a program demands a huge amount of sacrifices and many/most people don't necessarily have all this free energy (and time) to try - it should be seen very much as an optional thing.

(ii) we don't have hard evidence it works very well for lots of people. Some of the people she saw improving may have simply improved with time anyway. Or they were able to improve because they had paced well in the past and their body had healed to an extent (but they could have tested their limits in other ways).

The onus shouldn't be on patients to do experimental exercise treatments that demand a lot of their energy.

Also, doctors and others will tend to think when they hear exercise that people will be able themselves up to normal functioning.

Who are these patients that need to be encouraged to exercise more? [snip] Or indeed the relatively high functioning? Are you per chance looking down at the low functioning people and say they need to do more? I think if anything the low functioning people may be the ones who might be most likely not to stay in their envelopes - doing relatively normal social activities or a small bit of "pulling their weight" can be too much for them. [snip]

[snip]This is the problem. Many doctors already have false impressions of this illness. The CAA should be doing all it can to reverse these misconceptions (ie that we respond to exercise in the same way that normal healthy people respond) rather than reinforcing them.

Until doctors actually understand the disease process the only credible information about each person's illness comes from the patient herself.

If a person with ME feels they have the energy to increase their activity safely - terrific. We all want to get to a level of health where that is possible. But an externally imposed program of activity is completely inappropriate.

I think the concept of 'moving up the ladder' of functioning simply through physical and occupational therapy is a really poor analogy. You can't cure ME by incremental exercise. ME is not deconditioning. [snip]

[snip] For most of us, the things we have to do every day to live require more than we can easily give. This applies to the less affected too because they are often struggling to stay in employment or have commitments that the severely affected have had to give up.

We do not decide to spend a Sunday afternoon lazing on the couch instead of doing the washing, we collapse because we our bodies give out. An outside observer sees someone lying down and thinks chivvying them to exercise is the answer. It will only break our bodies more.

Not having the choice to do too little could be a definition of our disease. Like many people if I did not do more than my body feels comfortable with I would die.

To assume that there must be people out there not doing enough exercise is unwarranted and dangerous. Just evoking "there must be some" is not good enough when exercise is so dangerous for us.

[snip] The number of patients the average doctor will see who need to do more is vanishingly small but the number of doctors who cannot see that ME/CFS patients cannot exercise or do activity the way normal people can is horrifyingly large.

They must be educated about ME/CFS. That means their preconceptions must be overturned. They have been taught for years that deconditioning is harmful, exercise is good. They must be made to see it doesn't apply to us. It has to be hammered home. The outcome of very small amounts of exercise in a patient could be to become completely bedridden, in agony, tube fed and incontinent until a selfless family member injects them with a morphine overdose.[snip]

[snip] Given that people can have set backs from doing too much, and the high rates of adverse reactions from exercise programs, doing a little less than the very most one can do may in fact be the optimal strategy.

I wonder if perhaps a part of the difficulty we're having in getting some of these points across (that DOCTORS must be carefully RE-educated...and that it would be BETTER that exercise/activity is strongly NOT recommended - and "contraindicated" would be best, imo)....is that a great many people never make it into a doctors office regularly....to experience FIRST-HAND the ignorance! Lack of insurance, lack of qualified specialists, lack of access close by...much too ill, or just dis-trust and fear.

As someone who does go pretty frequently to doctors/specialists as well as referrals to labs/testing facilities etc....i can tell you that most non-pwcs and professionals are NOT listening or even attempting to understand the dangers.

When I was sent to a cardiology lab and ordered to do a treadmill-stress test/ct heart scan, I painstakingly photocopied every study I could find warning of the risks of this. I carefully explained the studies/info...and three technicians smiled, pointedly threw my papers in the trash in front of me...and told me to just try harder to do the test - that I'd be fine, I was just de-conditioned. (fortunately for me my HR skyrocketed to 180, within 2 minutes...and they stopped the test - but two minutes was all it took!)

When my I.D. doc found out he had a FIT, saying this was one of the WORST things that could have been done to me....and was justifiably worried about the long-term effects. Needless to say, I relapsed badly (many months).

And as I've said many times before, even my primary care doc and ESPECIALLY my Neurologist STILL automatically suggest exercise when I show up to my appointments. My neurologist wanted to make sure I had an adequate cane to use when I went for "long walks"! He said he had NO IDEA what the term "Post Exertional Malaise" meant.

Look anywhere on the internet and google exercise recommendations...yesterday I went to a site (i forget how to link...sorry teej!) that said "regular exercise has a positive effect on the general health of people with diseases and chronic conditions". Another said "Patients with Parkinsons, MS and Alzheimers should be encouraged to regularily exercise".

And, of course, they are fine for the "regular" population. NOT us! Obviously, those well enough to move without PEM occurring ..will MOVE on their own - without a recommendation to do so.

Doctors KNOW these recommendations...without WARNINGS TO THE CONTRARY for those with me/cfs from our advocacy groups...why in the world would WE be any different than a disabled MS patient...in their un-enlightened eyes???[snip]

 

[Orla]

Thanks Kim for going to all this trouble.

Orla

 

[fingers2022]

Thanks Kim for going to all this trouble.

Orla

I can't say any more than Orla has said, Kim. Respect and gratitude.

After all the years I have been away from this - (a) because it never got me anywhere, and (b) because I have been able to function and live a life for at least part of the time, I cannot belive that this is still happening. I was sure that things would have moved on. I have not been victim of any of this. In a way, quite the opposite, I wasn't diagnosed with ME for a long time becasue I could still function. I have been diagnosed with ME, but it's only an opinion. Maybe I don't have it.

I'm really sorry to all of you if I have a very trivial condition (maybe the fact that I only have 10% of previous function is all down to age?), but I still have some energy, and I UNDERSTAND (because of PEM), which is what the medical profession lacks.

Through this forum we can, and will, make a difference. We cannot remain as pawns in the game. Those of us who still have energy must act, and we can be steered by those who can only think and type. Power. Because no one else will do it for us.

 

[Cort]

Very vivid. My experience is that pushing through ones symptoms through exercising is basically a recipe for disaster. It just does not work. Of course that is what post-exertional malaise is all about.

 

[Gerwyn]

Very well done.A very vivid posting of the dangers of exercise. I agree that prescribed exercise is very dangerous and that is absolutely my personal experience.

Maybe I'm being too sensitive but I just want to note - because this is from a thread on the CAA - that while there is a exercise section in the CAA's CME that it does not prescribe exercise and that it is very careful to have doctors not force patients to exercise outside of their limits. The CME

• explicitly states not to exercise if it exacerbates their symptoms
• puts exercise in the context of other activities; ie if your energy is used up do not 'exercise' ie walk.
• largely focuses on anerobic exercise
• specifically warns doctors that 'exercise' as they know it will severely damage patients and specifically warns them against employing that type of exercise
• specifically notes that severely ill patients cannot exercise
• only mentions very low level exercises such as walking for a couple of minutes and then resting
  

I hope no one minds my stating this on this thread.

I dont think that anyone will mind Cort.My concern I that Drs Top and Tail things.They are very likely to draw erroneous conclusions from the way the CME is presented. If Drs suggest excercise to patients with severe ME(which most drs dont understand) by the time those patients experience exacerbation of symptoms it is too late the damage is done.That damage could cause a relapse which could last days,months or even years!Drs rarely reed the fine detail.They are highly likely to read the word excercise and interpret its meaning in the light of their prejudicial preconceptions and act accordingly.

 

[fds66]

Kim - you are a wonder. Thanks for all your hard work putting all this together.

 

[starryeyes]

Kim - thank you very much for putting this thread together. It's very useful for us because we can come here to get quotes to use when we need to answer people who are pushing exercise on us and for the committee that's assessing the CAA's materials and possibly writing our own.