• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Time for the Big Talk. How's the CAA doing?

Cort

Phoenix Rising Founder
Staci Stevens

My take with the severely disabled patients that unless they cannot move then most of them can and should do some stretching. We do know that being immobilized for long periods of time causes your tendons and ligaments to constrict potentially causing severe pain. Mike Dessin was flat on his back for almost 2 years - reversing the damage done to his ligaments or tendons was one of the more difficult things he had to do. He did prolotherapy and other techniques to get them back to normalcy.

The physical ramificatiions of being immobilized are REALLY significant.

Staci Stevens has had ME/CFS for several decades. She worked intimately as an exercise physiologist with Dr. Peterson for several years. She's done aerobic exercise tests on hundreds of patients. She started the Pacific Fatigue Lab - a lab devoted to the study of what exercise does to CFS patients. She was the first to elucidate the metabolic abnormalities that occur during exercise/repeat exercise tests. She creates exercise programs for people who do the repeat exercise tests based on the point at which their metabolic systems fail. She basically knows what exercise does and does not do to CFS patients better than anyone else in the world I would guess.

If you read this report you'll see that it's her belief that most CFS patients are doing too much activity. She uses the results of her exercise tests to to demonstrate that the most of the people who take them. They're usually appalled by how little 'safe' exercise they can do.


I agree that its a strange situation - promoting an exercise program that most people cannot do because there are you doing too much exercise. the only way this works, I think, is for the patient to get to their correct exercise levels first and then, by using the exercise program correctly, they can slowly increase their ability to exercise. This will help with their muscle tone, their feelings of well-being and their general health. There's no indication that I can tell that they can never engage in vigorous physical activity but many of them can feel better.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
My take with the severely disabled patients that unless they cannot move then most of them can and should do some stretching. We do know that being immobilized for long periods of time causes your tendons and ligaments to constrict potentially causing severe pain. Mike Dessin was flat on his back for almost 2 years - reversing the damage done to his ligaments or tendons was one of the more difficult things he had to do. He did prolotherapy and other techniques to get them back to normalcy.

I don't know a lot about Mike Dessin's story, but are you suggesting that at his sickest, he should have been trying to stretch? Was there really any way for Mike to be doing any more than he was at the time without making himself worse?
 

Lily

*Believe*
Messages
677
I don't know a lot about Mike Dessin's story, but are you suggesting that at his sickest, he should have been trying to stretch? Was there really any way for Mike to be doing any more than he was at the time without making himself worse?

I'm not sure Cort knows exactly what he means at this point, but perhaps he means that at the very least Mike should have been having daily passive range of motion exercises done by a caregiver?
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
...[A]s Dr. Klimas said, here's a group of patients that has been so badly neglected and mistreated that we actually view the possibility of a retrovirus as good news.

Here's an analogy I sometimes use. Think of the medical establishment as a patient in counseling. I've done a fair amount of counseling and in the beginning, clients almost always quickly gravitate to the least threatening yet still plausible explanation for a problem. Great, lets try the easiest/less threatening stuff first. The problem is, that's almost never it. In some cases counseling becomes a process of walking with the client as they iteratively try out a series of "the next least threatening explanations on their list of plausible truths." Fear goes up, in the best cases trust goes up and so does excitement because a client senses that they are finally making meaningful progress.

This makes a lot of sense, but I've never heard/ thought of that. Very interesting! I was a psych major and am still interested in the field. I'm going to have to add that to my list of wise quotes.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Here is a post from sunnyslumber I liked on the CAA is listening thread.

sunnyslumber said:
To everyone I think I should mention a few points about which there is consensus and which may serve as a starting point for further discussion:

1.) The CFIDS Association missed a huge opportunity to publicize the WPI discovery and say "SEE! This is what we've said all along--that this is a biomedical and extremely severe illness!"

2.) The problem with mentioning CBT and other such therapies is not that they might have a small helpful effect on someone's outlook or well-being but it is that the people who promote CBT invariably use this as a jumping point for their hand waving arguments about how this is all in the mind. The two are practically equivalent to the scientists who study this in the psychiatric model, I don't know how anyone could research this and come away with a different conclusion. By mentioning CBT these person's researches are in a sense legitimized.

3.) All of the studies with CBT are almost all Oxford or Fukuda, suffice to say we should all be able to agree that for every "CFS/ME" patient there are many more with persistent fatigue in the Oxford Criteria. The Fukuda probably has a better ratio of real "CFS/ME" patients to patients who are merely burnt-out, sleep deprived and so forth. Additionally it is easy to see anyone with even Chronic Migraines could quite easily qualify under Fukuda.

4.) Due to the intermixing by the Fukuda, a relatively distinct group of patients (as some of the prominent Clinicians have said: "The same exact song all over again") and a group of patients who have real illnesses but not CFS we have come up with this disastrous paradigm that CFS is "heterogeneous" and then you can't make heads or tails of any research --since someone, a researcher or politician can always respond "Well it *is* heterogeneous."

5.) Assuming the WPI didn't exist, how would patients today be better off than they were ten years ago? There are no new treatment options from the CAA's research efforts as yet, and treatment is more or less the same area where it was a decade ago.

6.) Why won't the CAA just come out and say Fukuda '94 and Oxford '91 stink? I mean they should just say this is a different illness than described by those definitions and say that the closest thing we have to a real definition is the Canadian one.

* Not a consensus point but this is frustrating for me, why not take the psychiatric lobby head on instead of trying to outwit them as they seem like they are doing? Just tell them point-blank they are studying something different: "persistent fatigue" --it doesn't matter whether their findings would seem to help us or not, there is no need to cherry-pick the "biomedical ones", they are not relevant and therefore should be denied as research findings for CFS/ME.

Sunnyslumber,

All excellent points, I especially agree with your last point- the psych lobby's little trick- the Oxford definition- is the foundation (other than flat out lies and disingenous speculation passed off as fact) for all their nonsense. And the Oxford criteria are straight up idiopathic CF! Thus all their studies are totally invalid. These charlatan insurance lobbyists exist outside of science. End of Story. This is the central point that CAA needs to be hammering home, not going out of it's way to put a stamp of approval on.

re: # 5) It is a scary thought to think of what if WPI hadn't come along and all we had was CAA.

BTW this sort of discussion (rather than specific communication with Jennie) has moved over to this thread:
http://www.forums.aboutmecfs.org/sho...-the-CAA-doing
 

Dolphin

Senior Member
Messages
17,567
I agree that its a strange situation - promoting an exercise program that most people cannot do because there are you doing too much exercise. the only way this works, I think, is for the patient to get to their correct exercise levels first and then, by using the exercise program correctly, they can slowly increase their ability to exercise. This will help with their muscle tone, their feelings of well-being and their general health. There's no indication that I can tell that they can never engage in vigorous physical activity but many of them can feel better.
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.

(Apologies for having this down twice for a while)
 
Messages
5,238
Location
Sofa, UK
My understanding of the latest thinking on these questions was/is that some of the new 'pacing' techniques are now considered by many CFS campaigners and practitioners (from the 'good' side) to be reasonable and effective techniques for many patients, and that these new approaches stand in stark contrast to the flawed GET approaches. I seem to recal either Dr. Mikovits or Dr. Klimas speaking positively of a 'pacing' strategy and taking pains to define the limits of the approach precisely; the approach seemed reasonable and made sense to me as follows:

5 minutes on, 5 minutes off. Meaning:
Absolute Maximum of 5 minutes at a time of any strenuous aactivity (doubt that this should really be that 'strenuous', I expect lighter activity is preferred).
For every 5 minutes activity, 5 minutes enforced rest: It often proves difficult for patients to restrict themselves and force themselves to rest for the full 5 minutes because after a few minutes they may feel recovered and ready to go again, but they must train themselves to rest for the whole time.

In this sense, the 'pacing' strategy seems to actually be a way of encouraging patients to do less demanding activity and to learn to work within their limits and resist the temptation to push the boundaries.

This approach makes a lot of sense to me, although for myself I'm not going to take the risk of resuming exercise just yet, but I have been thinking about it recently. I would dearly love to play some sport again, or resume martial arts training, for example, but I think for now it's wise to discipline myself rather than risk a relapse. So here I remain for now, mostly oscillating between horizontal and vertical in :sofa:.

I'm not sure how all this relates to the baseline theory, but my guess would be that findings are that in practice patients can discover and reach a knowledge of their own baseline activity limits and find an effective equilibrium, but that we can't actually expand that horizon through exercise, rather we can experiment to find the limits of our individual cages.

That would all make sense to me since that is my experience. I hope I haven't misrepresented the theory that I've read, or the views of Drs Klimas and Mikovits, but I'm sure tomk and others will be able to set me straight if so, and provide the relevant links and quotes. I think it's extremely important that we define such difficult boundaries as this one, so that we have a clear understanding of the distinction between current best practice and dangerous and outdated techniques like GET.

I think that contentious arguments over such questions could best be resolved if a clear demarcation of these distinctions were defined, and that many of the doctrinal differences of the past are actually now resolvable through new and more enlightened theories regarding counselling and the place of modern activity management techniques. That may be a difficult and complex argument to hold, and it may be difficult for many to move beyond entrenched positions, but it should be possible for the reasonable people here to use discussion and user polls to define a reasonable group position on questions such as these. I hope we can achieve that one day.
 

Dolphin

Senior Member
Messages
17,567
Thanks for your contribution.

My understanding of the latest thinking on these questions was/is that some of the new 'pacing' techniques are now considered by many CFS campaigners and practitioners (from the 'good' side) to be reasonable and effective techniques for many patients, and that these new approaches stand in stark contrast to the flawed GET approaches. I seem to recal either Dr. Mikovits or Dr. Klimas speaking positively of a 'pacing' strategy and taking pains to define the limits of the approach precisely; the approach seemed reasonable and made sense to me as follows:

5 minutes on, 5 minutes off. Meaning:
Absolute Maximum of 5 minutes at a time of any strenuous aactivity (doubt that this should really be that 'strenuous', I expect lighter activity is preferred).
For every 5 minutes activity, 5 minutes enforced rest: It often proves difficult for patients to restrict themselves and force themselves to rest for the full 5 minutes because after a few minutes they may feel recovered and ready to go again, but they must train themselves to rest for the whole time.

In this sense, the 'pacing' strategy seems to actually be a way of encouraging patients to do less demanding activity and to learn to work within their limits and resist the temptation to push the boundaries.

This approach makes a lot of sense to me, although for myself I'm not going to take the risk of resuming exercise just yet, but I have been thinking about it recently. I would dearly love to play some sport again, or resume martial arts training, for example
I'm not 100% sure what you are saying but you may be saying that you have heard an exercise strategy that seems plausible but you are not doing it at this moment.

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.
 

leelaplay

member
Messages
1,576
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 (which is not what the evidence shows).

I love your clarity on this issue Tom. 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.

Please keep on saying it until it is the norm in understanding this disease.

And now love the new analogy of any specific exercise strategy being like an experimental drug - bravo!
 
R

Robin

Guest
Mike Dessin was flat on his back for almost 2 years - reversing the damage done to his ligaments or tendons was one of the more difficult things he had to do. He did prolotherapy and other techniques to get them back to normalcy.

Well, if he was flat on his back for two years he would have been unable to roll over and thus unable to stretch.

Normally what you have to look out for in immobile/bedrest situations are things like bedsores which can lead to infection, bone density loss, thinning of the skin, pneumonia (if the patients isn't strong enough to cough), bloodclots, things like that. Somebody that weak would not be able to perform stretching or mobility exercises without assistance, it would probably have to be done passively like with paralysis patients.

If you're very ill energy is at a premium and stretching can displace more functional activities that are probably more useful for your body, like getting up and going to the bathroom. (If you can, of course, some people get too ill to do even that.)
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Exercises worked out for people with CFS would be great for those wanting and able to do them, but for the rest of us it is the activities of living that are important. By starting very gradually I have managed to do a bit more when I am able to do anything at all, but being a bit fitter has had absolutely no impact on my symptoms.

Sorry, I can't find the post, but ME is not usually progressive. I know of quite a few people who have managed to work until retirement by resting at night and weekends. While we should be aware of how bad things could get, it is not inevitable and most of us will avoid it. It is not length of time ill that determines severity - I have been ill for forty two years now. It is over activity which is most likely to push people into being bed bound or housebound. I firmly believe that the single most useful thing to do to prevent a deterioration is to keep activity within a safe level.

If doctors would get over their obsession with people doing too little and concentrate on helping their patients keep within their limits it would save many of us from the awful consequences of advanced ME/CFS.
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
The adverse effects of deconditioning are overblown, in my opinion. Dr. Bell told me in the late '90s that people who recover from ME/CFS regain their conditioning in one month.

As Cort noted, Mike Dessin was able to reverse the temporary problems caused by inactivity when his health returned. But many of us who have forced ourselves, or been forced, to exceed our activity limit have never reversed the damage to our bodies. Years or decades after the event, we remain at a lower level of functioning.

That's why the CAA literature's embrace of CBT, GET and their derivatives--all of which encourage PWME to live beyond their capacities--is so troubling.
 
R

Robin

Guest
As Cort noted, Mike Dessin was able to reverse the temporary problems caused by inacitivity when his health returned. But many of us who have forced ourselves, or been forced, to exceed our activity limit have never reversed the damage to our bodies. Years or decades after the event, we remain at a lower level of functioning.

Yeah, it's like a risk/benefit thing. Are the benefits of conditioning worth the risks of damage by whatever process (probably inflammatory) that gets trigged by overexertion? Hell no.
 

Orla

Senior Member
Messages
708
Location
Ireland
Excellent post Robin (Edit, also Rebecca, only saw yours after I posted mine),


Well, if he was flat on his back for two years he would have been unable to roll over and thus unable to stretch.

Normally what you have to look out for in immobile/bedrest situations are things like bedsores which can lead to infection, bone density loss, thinning of the skin, pneumonia (if the patients isn't strong enough to cough), bloodclots, things like that. Somebody that weak would not be able to perform stretching or mobility exercises without assistance, it would probably have to be done passively like with paralysis patients.

If you're very ill energy is at a premium and stretching can displace more functional activities that are probably more useful for your body, like getting up and going to the bathroom. (If you can, of course, some people get too ill to do even that.)

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.

Orla
 

Orla

Senior Member
Messages
708
Location
Ireland
About the problems with muscles/ligaments that that can sometimes arise from being very severe, there are some measures other than exercise, that can help prevent some problems from lack of mobility. These measures are sometimes not put into place because either the physicians have no awareness of how sick people are, people don't have a physician that will do home visits, or the physician adopts the psychiatric view of ME/CFS (whether they are aware of that this is what they are doing or not). If the physician thinks that the patients needs to exercise, or do more, they may focus on exercised based "solutions" to problems rather than adopting other useful measures such as splints to stop the hands from clawing the the like.

I heard of one UK case where neurologists had put splints on one childs hands to stop them from clawing, but when the psychiatrists got a hold of the child and took over the care they removed the splints and the childs hands became clawed. So they caused a problem that need not have existed, because of their view that patients needed to be pushed to do more. (The child later got better, no thanks to the psychiatrists).

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 made 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.

Orla
 
C

Cloud

Guest
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.
 

Dolphin

Senior Member
Messages
17,567
tomk said:
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 (which is not what the evidence shows).

I love your clarity on this issue Tom. 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.

Please keep on saying it until it is the norm in understanding this disease.

And now love the new analogy of any specific exercise strategy being like an experimental drug - bravo!
Thanks IF. :Retro smile:

I'm enjoying this thread in a way - lots of people making good points, sharing experiences, etc.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Telling pwME to Exercise is Never More Helpful than Noise

...Deconditioning is generally much less of a risk than making the ME/CFS worse through pushing exercise programmes...

(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.

Orla

...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...
Orla
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.

A little digression...
I haven't been regularly in touch with more than one or two other pwME until the XMRV article when I joined this forum. Instead I have mostly read pretty much all the good books that have been published on ME and some journal articles. I have been impressed with seeing my exact symptoms portrayed in the good books, and then seeing my life and disease mirrored in everyone I have ever met (including here on PR) with ME.

As James Jones noted before he turned to the dark side and went to CDC- when he got patients together, it was amazing to him to see them recognize the disease so exactly in each other without any foreknowledge of their 'confreres' or the disease even having a name (other than ME, unbeknownst to patients back at that time in 1984) or even a set of symptoms agreed upon by doctors. But these patients could all agree on the symptoms. It was easy; they all had the same ones.

When I started reading journal articles and medical textbooks, I was totally shocked how so many of the authors had absolutely no idea what the disease they were writing about was. It really stupefied me that such incompetence could even be published in journals, much less that it was the norm for ME.

Some things I would read and even if I hadn't read anything about that topic before, I would just absolutely know the author was full of sh!t just from inferring from what I did know and from my own experience. And I think that is the way it is for almost all of us. We Know. We know in our bones how poisonous exertion beyond our meager limits is. We learn this lesson every single hour of every day for decades.

But still some of the doctors say, on lesson after lesson that we have learned so well, on fact after fact that we know in our bones: "There's no way that lesson is possible; we have proven what you call a fact is untrue." And then the actual facts start coming out, more and more and more over the years and they all confirm exactly what we knew already from day one.

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!"
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Justin, you have reached the "ME acceptance point" :Retro smile: If we are to survive we all reach a point where we know, in our bones, that no one out there can help us, that we have to find our own way through by listening to our bodies.

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.

Mithriel
 

Dr. Yes

Shame on You
Messages
868
My take with the severely disabled patients that unless they cannot move then most of them can and should do some stretching.

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

The physical ramificatiions of being immobilized are REALLY significant.
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.

the only way this works, I think, is for the patient to get to their correct exercise levels first and then, by using the exercise program correctly, they can slowly increase their ability to exercise. This will help with their muscle tone, their feelings of well-being and their general health.
Cort, you just heard, yet AGAIN, articulate statements from a bunch of patients who have experienced the exact opposite of what you stated above and of a central tenet of the CAA's recommendations on exercise. You can't rationally conclude that these patients are a coincidental cluster of freakish cases. On the contrary, they are clearly representative of far greater numbers. Why would the CAA choose to ignore so many patients? This denial of reality must stop now.