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

Orla

Senior Member
Messages
708
Location
Ireland
CME on avoidant behaviour (their sources)

(I wrote this out earlier, as a follow on from my other posts on the exercise phobia psychobabble. I haven't read all the messages in between yet.)

Just to look at the source of this comment from the CME:

Some people with CFS inappropriately avoid all activity because personal experience has demonstrated a link between exertion and symptom severity.[69,70]
http://cme.medscape.com/viewarticle/581527_8

These are the references they give:

Lloyd AR. To exercise or not to exercise in chronic fatigue syndrome? No longer a question. Med J Aust. 2004;180:437-438.

Goshorn RK. Chronic fatigue syndrome: a review for clinicians. Semin Neurol. 1998;18:237-242.
http://cme.medscape.com/viewarticle/581527_8

Unfortunately I cannot get the second paper, but it is a review rather than a study, so if he does mention this avoidance he is probably just quoting someone else's (CBT-school friendly) opinion. There is no evidence for the avoidant behaviour theory.

The first reference is an editorial, i.e. an opinion piece, also not a study, by Andrew Lloyd who is CBT School (though he has done some interesting research recently into infections and ME/CFS).

So the CME is getting some of its ideas directly from the CBT school. (I also noticed some other questionable comments, and sources for those comments, in the CME matierial but I want to focus on this issue now).

I had a post earlier about the CBT school and their thinking on our allegedly avoidant behaviour
http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=69923&viewfull=1#post69923

Just to look at that Andrew Lloyd editorial. Even the title is problematic:

To exercise or not to exercise in chronic fatigue syndrome? No longer a question Andrew R Lloyd MJA 2004; 180 (9): 437-438

http://www.mja.com.au/public/issues/180_09_030504/llo10096_fm.html

And this is what he says about our behaviour (it is typical CBT-School stuff).

Lloyd
The CBT approach in treatment for patients with CFS is based upon the premise that cognitive attributions and behavioural patterns act as perpetuating factors for symptoms.

[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. Back to Lloyd's Editorial]

Lloyd
In particular, given that the cardinal phenomenon of fatigue in CFS is characterised by a marked and prolonged exacerbation of symptoms following minor physical activity, patients may reach the conclusion that it is best to avoid exercise. Thus, patients may develop an understandable cognitive attribution that exercise is harmful in the short term (as symptoms are worsened) and detrimental in the longer term. This leads to altered behaviour in the form of reduced physical activity with consequent deconditioning.... Accordingly, the CBT approach generally seeks to alter these cognitive attributions and modify the associated behavioural patterns... one can safely conclude from these studies that graded physical exercise should become a cornerstone of the management approach for patients with CFS

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.

Funnily enough (or not funny really) the CAA actually word their comment more strongly than Andrew Lloyd does here, as he just talking about avoiding exercise (so in theory the doctors might just pick on you for not exercising, and not start thinking you were avoiding ALL, or other, activities, or basically choosing not to do things). All of Andrew Lloyd's references for his Editorial are from the psychosocial school of thought, other than the reference to the SF-36 (this is a questionnaire to assess people's self-assessed functioning in areas such as physical and emotional functioning, so it is basically a technical sort of thing).

[This Lloyd Editorial is bizzarely contradictory. On the one hand Llyod basically criticises patients for avoiding exertion which makes them worse, and suggests CBT to modify their thoughts and behaviours, but then seems to think avoiding pay-back is ok, though only when it fits his agenda (He only mentions this is ok in the context of a "graded" exercise programme, where the patients are being good little boys and girls. It is not graded of course if their activity levels are fluctuating, and there is no evidence that patients actually increase activity on GET programmes).]
 

Dolphin

Senior Member
Messages
17,567
There was a significant period in my life after having acute onset CFS when my symptoms were significantly less pronounced (doing better than Cort is right now). FOR MYSELF, I feel that at that time completely avoiding all stretching and any exercise would have been detrimental.
I don't believe people are recommending people do nothing. But if somebody is relatively well, they will most likely naturally be doing things.

As you said yourself:
CBS said:
As for counseling, I have never met a CFS patient that needed to be told to do more.

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.
 

Orla

Senior Member
Messages
708
Location
Ireland
Follow on from previous post re Lloyd's Editorial

CAA might have done well to look at replies to that Lloyd Editorial before they referrring to it unquestioningly.

There were some letters in response to Lloyd's Editorial which can be read here:

http://www.mja.com.au/public/issues/181_10_151104/letters_151104-6.html

A few points from these comments:

A recent editorial and article continue to promulgate and link the unproven concepts that patients with chronic fatigue syndrome (CFS) are deconditioned and exercise is beneficial in treatment

....A fundamental flaw with most exercise studies in CFS is the use of submaximal or symptom-limited tests, which provide notoriously misleading data when compared with maximal exercise testing procedures. Wallman et al correctly identify maximal oxygen consumption as the gold standard measure of exercise capacity, yet such measurements were not made in the three articles they cited. When such procedures are applied, the exercise capacity of people with CFS is not significantly different from either measured or age-predicted values for healthy sedentary people

...In summary, patients with CFS are not deconditioned. Neither their muscle strength nor their exercise capacity is different from that of other sedentary members of the community(> 70%). We remain unaware of any incontrovertible evidence that the various exercise training programs suggested in previous articles improve either the physiological or clinical status of people with CFS.

Garry C Scroop,* Richard B Burnet

* Visiting Associate Professor in Exercise Physiology, Department of Thoracic Medicine;
Endocrinologist, Royal Adelaide Hospital, SA 5000
 

Dolphin

Senior Member
Messages
17,567
I'm sorry if that doesn't fit with anybody's personal experience. It doesn't actually fit with my experience. (I can increase my endurance at exercise but my symptoms flare up and the rest of my life goes to pot). I've never had the discipline to to the kind of exacting monitoring that her approach requires and it and with may not work for me anyway.
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 exericse 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.
 

Dolphin

Senior Member
Messages
17,567
I think just the mention of 'exercise programs' is very offputting because everybody would love to exercise again! I would do anything to be able to exercise again! I was an ardent exerciser. And the simple fact that the programs are there somehow suggests that we don't want to. I get that. Its kind of demeaning looking at them.
Yes, good point.
 

Orla

Senior Member
Messages
708
Location
Ireland
Follow on from post about Lloyd's Editorial (which the CME cites)

Another response to the Lloyd Editorial worth looking at (the journal had printed a research article by Wallman et al promoting GET, and the accompanying Lloyd Editorial, which the CME referenced). These are some extracts from the letter. Note the last sentence in particular.
Conclusions from the article by Wallman et al cannot be generalised to the severely ill.... Loblay, Chair of the Royal Australasian College of Physicians Working Group for CFS Clinical Practice Guidelines, urges caution about generalising from exercise studies, which never include people with severe CFS: “All these studies involve people willing and able to participate. The people who find it makes them feel lousy drop out.”

Lloyd asserts exercise is no longer a question (“. . . graded physical exercise should become a cornerstone of the management approach for patients with CFS”). To promote such a strong, unqualified message to busy general practitioners who may be unfamiliar with the range of severity in CFS risks serious harm to patients.

Ellie Stein,* Christine Hunter†

* Psychiatrist, 4523 – 16A St SW, Calgary, Alberta, Canada

† Consumer advocate, Alison Hunter Memorial Foundation, Sydney, NSW

151104-6
 

Dolphin

Senior Member
Messages
17,567
Orla said:
from from the CAA info (someone else quoted this, i have not read through all the info yet):

>

It might be easy to not get too excited about it if you feel it is not about you. However this sort of nonsensical statement (re exercise phobia) needs challenging. This is not just because it is unsubstantiated CBT school rubbish, not just because the more severe a patient the more vulnerable they are to the abuse and ignorance of others (and at a time when they most need help), but also because this sort of thinking affects all of us.

[Edit: and the above statment gives the impression that peope become severe because of phobia. For people who are severe it could be very bad if everyone around them, that they are utterly dependent on, started to think this way, it could be a great excuse to neglect them and not meet basic needs.]

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?).



But there is no evidence that this is appropriate or helpful.



Well not as bad as ME/CFS. 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.

Orla

Those are the doctors findings. They're not saying that curing kinesophobia is going to cure CFS! or that CFS is kinesiphobia (Imagine what a different document it would be). They're saying that for some patients they should be encouraged to move more. Nowhere in this document does it say that moving more - getting more exercise - is going to cure CFS. Hence the short focus on kinesphobia is only designed to improve quality of life in some patients.

That's my take. I don't see how a doctor could read this and come away with any other idea.
Who are these patients that need to be encouraged to exercise more? I'm guessing you're not putting yourself in that group, Cort? 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. But the people reading this program won't get the message.

I think there have been two studies that tested kinesophobia. A team involving Peter White found it wasn't an issue. While a team involving Nijs defined kinesophobia as those in the upper median as I recall (so one will always have such a group).

Orla explains the problems well.
 

Dolphin

Senior Member
Messages
17,567
Cort said:
I think you should take into account who wrote it. If I come across something by someone that I trust that I don't quite get then I'm willing to check it out a bit more. I certainly trust Dr. Bateman. If she hasn't earned our trust then I don't who has - honestly.

From what I know of her, I am impressed with her. I have trouble believing she or Dr. Lapp wrote this, it was probably another author. If they have their names on it though, I think that Dr. Bateman and Dr. Lapp should have looked it over and approved it prior to publication.

Orla had a good point about the terminology- "phobia" means an irrational fear resulting in panic if exposed to the object of the phobia. This is not true of ME patients. This is very obvious to everyone here except you.

My point was we can't have blind faith in the 'experts'. This is lesson one in the story of ME/CFIDS. If you know something is wrong or harmful, don't publish it even if it was written by an expert.
Exactly justin.

I think somebody (CBS?) has just said material like this needs to be vetted by patients.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
CAA, Check Yourself Before You Wreck Yourself

...
If the CAA will not listen to the many voices that have been raised to it over the years on these issues, then it fails at least in large part as an advocacy group. If its positions - no matter how nuanced - are ultimately potentially harmful to many of its constituency (like those of us who have posted here over the months) then how can it call itself 'our' advocacy group with a straight face? And how can those who support it say they are really on 'our' side? We should strive to ACTUALLY be on the same side, to agree that no members of our community are mistreated or left out by our common positions, instead of blindly supporting the positions of a handful of individuals who happen to hold the reins of an organization.
Warning: DO NOT READ THIS POST IF YOU DON'T LIKE SNARK.

Our patient advocacy organization is certainly not our advocate, but an advocate for many of our adversaries, eg CDC, british CBT and GET proponents. This is a betrayal and IMO unethical. If they were lawyers (the archetype of the advocate) they would be disbarred and sued within an inch of their lives for malpractice.

The current positions of the CAA on exercise/activity and behavioral modification are ignorant of political and physiological reality and dangerously neglectful of many PWC, including the most vulnerable (and therefore most in need of advocacy). The fact that these positions are promoted, for example, in the CME, which is intended to educate physicians about how to treat us, further makes this not a matter of opinion vs. opinion, but of some quality of life vs. terrible suffering, of livelihood vs. poverty for so many of us.

The CAA is used to heavy criticism, apparently.. do its members REALLY think that all those who criticize it are just naive or unrealistic? (Or even 'kinesiophobes'?)

The CAA will grow in strength when it includes all of our needs in its positions. Divisions only grow because it ignores these needs. If it continues to do so, it is time for the top of the organization to go - that is the only way it can save itself.

As for supporters of the CAA who would argue even the points raised in the last several posts, and ignore the personal stories told, I can only say that you are apparently more interested in the abstract concepts of an organization and of 'advocacy' than in the human beings that are ALL supposed to be advocated for.

I am sick of seeing us being "handled" by the CAA in familiar politico-bureaucratic fashion, or of being challenged incessantly by the repetitive and self-contradicting arguments of at least one of its supporters, without ever having real policy changed to meet my needs and those of many others who desperately, desperately need it.
Who is this 'supporter'? Can we get him kicked off the forum?
Cort- I told you not to read this post!

Please stop ignoring us -- and don't try to tell us you are 'not ignoring' us until you have changed your official and unoffical positions such that they meet our needs.

All very well said, Dr. Yes. Nice reality check for CAA.

CAA, you best "chiggity-check yoself before you riggity-wreck yoself" (Ice Cube)
 

Orla

Senior Member
Messages
708
Location
Ireland
Excellent points Robyn. GET proponents don't like to deal in facts however, so try to avoid reasonable arguments like this one.

Here's another question. I work with a girl that just recently had gastric surgery. She weighed close to 350 lbs. She has been he heavyset her whole life and told me she hasn't been able to exercise in years. She has never exhibited CFS or fibro symptoms from deconditioning. Why do you think that is? She has sat at her desk for the 10 years we have worked together because even walking around the office a few feet would leave her out of breath. Deconditioning or lack of exercising does not cause this. Since her gastric surgery she can walk all over the place. It took medical intervention to help her situation. Not a walk around the block. We need the same kind of medical intervention, exercise is not the miracle cure. We need to find what is causing this. When that happens we will again be able to exercise. Hopefully!
 

Cort

Phoenix Rising Founder
I'm guessing you're not putting yourself in that group, Cort? 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. But the people reading this program won't get the message. - Tom

That thought never crossed my mind (looking down on people). I'm sorry it did yours. It seems to me that in any group of people some people will overdo and some people with underdo. I don't think that's unrealistic. I think we're all just human beings here.

After all Bruce Campbells program is designed so that people can figure out what the best level of activity is. Maybe you are all gifted in that area but I am not. I have overdone it at times and underdone it at times.

One can not assume "exercise will help their muscle tone",
one can not asssume exercise will help "their feelings of well-being"
and
one can not assume "their general health".
And most importanly, one can not assume that "they can slowly increase their ability to exercise" Tom.

I've made my points - I think they're pretty mild ones. I would note that no one can assume anything about exercise or activity or any treatment options for CFS. I agree that no one can assume that they can slowly increase their ability to exercise. Again, you're taking that out of context and I honestly don't appreciate that. That was written trying to explain how Staci's program works when it does work. She does not say, as I noted - but which you've ignored that everyone can increase functionality.

As I've pointed out with quotations - that portion of the program repeatedly couches its recommendations in the context of not doing anything that exacerbates ones symptoms.

patients must learn to stop activity before illness and fatigue are worsened.

Encourage patients to be aware of their own personal threshold of relapse, even when it seems like a moving target, and learn to avoid triggering relapse symptoms by keeping activity within a safe limit.

The program does not suggest that exercise must be done as has been suggested here; indeed it defines 'exercise' as simply another activity that must be managed.

Advise patients to consider all the movement and activity they engage in, including personal grooming, grocery shopping, household chores, tasks performed during full- or part-time employment, anaerobic exercise, and aerobic exercise, when developing an energy management program.

It is very careful about the dangerous aspects of exercise.

Instead of helping patients, such vigorous cardiovascular exercise can provoke postexertional malaise, a hallmark of CFS that is defined as exacerbation of fatigue and other symptoms following physical or mental exertion. Even worse, this kind of exercise can precipitate a full-scale relapse that lasts for days or weeks.[68]

It does not say that everyone can do it

Low-level exercise, including stretching, strength training, and simple resistance training, appears to be reasonably well tolerated by most patients, as long as they learn to avoid overexertion.

The low level exercise is very low level eg 2 minutes at a time followed by 3 6 minutes of rest. It again notes the need even in this very small exercise program to 'avoid overexertion'.

It again emphasizes that patients not exacerbate their symptoms; note that they refer to activity levels rather than exercise

t Instruct patients to return to the most recent manageable level of activity if they report that exercise is worsening symptoms

They note that for some patients basically almost no 'activity' is possible ie they are only able to do things like grasp objects

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

The focus again is on managing activity levels

CFS patients are advised to balance any activity with rest and to "experiment" with the level of activity that is tolerated to find their own personal threshold of activity.
 
G

Gerwyn

Guest
That thought never crossed my mind (looking down on people). I'm sorry it did yours. It seems to me that in any group of people some people will overdo and some people with underdo. After all Bruce Campbells program is designed so that people can figure out what the best level of activity is. Maybe you are all gifted in that area but I am not. I have overdone it at times and underdone it at times.

If someone with severe ME overdoes it the consequences can be severe provoking a crash that may last for years.Overdoing it could be doing something apparently insignificant to a third party observer like reading a little to0 long.Those who are lucky enough to be able to read of course.No there is no such thing as a person with severe ME" underdoing it"
 

Cort

Phoenix Rising Founder
I do not see the CME externally imposing anything. I think its a quite careful document. I think it should emphasize more the fact the many patients are overdoing - altho its clear in the energy management section that avoiding the push-crash cycle is imperative. (So how is that externally imposing anything?). Isn't that what you want doctors to say? Isn't that something we've been waiting for for years? That doctors recognize post exertional malaise is a big problem; that we're not malingerers, that we can only engage in very limited amounts of exercise, if that? That's all here! Its right there!

Somehow this is being turned into a 'imposed exercise program' and people are talking about getting on bikes....that's not in this program. If I'm wrong please show me here it is in this program. I don't see anyone stating that you must exercise. Please show me where that is in this program.

Here we are talking about exercising at the anerobic level. .

One way to exercise is interval activity. Repetitions consisting of 3 minutes of exertion should be followed by 9 minutes of rest; 5 minutes of exertion should be followed by 15 minutes of rest; and so on. Alternatively, a patient can use a heart rate monitor and set the alarm at his or her anaerobic threshold, or AT. The AT is calculated by subtracting a person's age from 230 and multiplying by 0.6. For Nancy, who is 43, this means her AT is 112, the estimated heart rate at anaerobic threshold. If the monitor alarm sounds, Nancy would know she has exceeded her AT, and that she should immediately stop and rest.

I recognize that the talk about exercise in itself is offputting because we would all love to exercise and this program appears to suggest that we aren't exercising enough. But the prescription, such as it is, is exceedingly mild.

I see exercise as one option among many with an emphasis on managing ones activities so that ones symptoms do not flare up. When I see 'exercise' I see mostly anerobic exercise and a very limited amount of that.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Cort said

It seems to me that in any group of people some people will overdo and some people with underdo.

This may apply to normal people as they have as much exercise capability available as they need to live. You are the first person with ME/CFS I have ever heard, in forty years, say they have done too little. I honestly don't know what you mean when you say you have occasionally under did it. Do you mean you made yourself ill by lazing about or do you mean you had some spare capacity for exercise which you did not fill?

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.

Mithriel
 

Cort

Phoenix Rising Founder
If someone with severe ME overdoes it the consequences can be severe provoking a crash that may last for years.Overdoing it could be doing something apparently insignificant to a third party observer like reading a little to0 long.Those who are lucky enough to be able to read of course.No there is no such thing as a person with severe ME" underdoing it"


From the CME

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

I do agree that this is overly optimistic! That patients will be able to handle getting up, personal hygiene at some point but everything is still constrained by the fundamental point that if activity increases your symptoms - don't do it!

I also agree the CME does not address the really, really severely ill patients like Mike Dessin was. That's a hole in it, for sure. I'm not saying that its a perfect document. I would address the overactivity element more. I would put viral and hormonal therapies in there. Its not perfect - but its the best that is out there for general consumption and its far, far, better than the SPARKS document.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Cort said

I see exercise as one option among many with an emphasis on managing ones activities so that ones symptoms do not flare up. When I read this document I see exercise as an option for patients who have energy left after their other activities. Maybe there's few of those patients - I assume that there are. But when I see 'exercise' I see mostly anerobic exercise and a very limited amount of that.

The problem is that this is an educational document for doctors. Your interpretation of exercise is not relevant, it is THEIR interpretation that matters and they are more likely to see exercise bikes and gym memberships.

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.

WHERE IS THAT IN THESE DOCUMENTS?

Mithriel
 

Cort

Phoenix Rising Founder
Thats my experience Mithriel. For the vast majority of my time with CFS I over did it; I was working part time and/or going to school and my life was a series of pushes and crashes. Then I stopped working altogether and I still over did it. Then for a period of time - after I started the Amygdala Retraining - I underdid it - I stopped going on my short walks. At some point I realized that I was under doing it. I reinstituted my walks and I did feel a bit better.

I'm not in the case where if I overdo it physically that I will die as you are - I'll simply feel much worse.
 

Dolphin

Senior Member
Messages
17,567
It seems to me that in any group of people some people will overdo and some people with underdo. I don't think that's unrealistic. I think we're all just human beings here.
Doing a bit too little than is optimal is not the same as kinesophobia which is what was being discussed.

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.
 

Cort

Phoenix Rising Founder
Cort said



The problem is that this is an educational document for doctors. Your interpretation of exercise is not relevant, it is THEIR interpretation that matters and they are more likely to see exercise bikes and gym memberships.


Mithriel

Believe me, if I thought it was doing that I would have been against it but I don't see it doing that. The way I read it this program is designed so that those old exercise prescriptions of the past are finished. This paragraph specifically attends to that.

Worsening of symptoms following even minimal exertion is a hallmark of the illness.[66] Clinicians should be aware that advising patients who have CFS to engage in vigorous aerobic exercise and "go for the burn" or "release those endorphins" can be detrimental.[67] Most CFS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise can provoke postexertional malaise, a hallmark of CFS that is defined as exacerbation of fatigue and other symptoms following physical or mental exertion. Even worse, this kind of exercise can precipitate a full-scale relapse that lasts for days or weeks.[6

I would have gone further with this. I would have said 'all' CFS patients. I would have said that vigorous exercise 'does' provoke PEM - after all in the next line that's what they say. I would have put months in the last line. As I noted I think there should have been more on the seriously ill patients. So the documents not perfect.

But nowhere does it suggest that patients get on a bike; in fact its very clear that that's the authors are specifically trying to avoid that happening. I don't see where you're getting that from. If you're going to have exercise in a document this is pretty darn good; it suggests limited mostly anerobic exercise, in very small increments and not vigorous cardiovascular exercise.

Doctors should have eyes opened about CFS simply by reading this document. They should go from CFS patient: 'malingerer - just get them on an exercise bike' to CFS patient: very serious condition - be very careful with exercise. Do it in a very limited fashion. Do not make your patient worse.

I just don't see how to read it any other way.

I understand why people don;t want to see any prescriptions for exercise. I get that - it sounds wrong on the face of it. I agree with that. For myself I think I'm at my right 'exercise level'. It didn't take me a program to find it. But what is here is carefully done - it posts strict limits on exercise or activity - it promotes anerobic exercise - and it states that everyone should find their own level that does not exacerbate their symptoms. This is not the old GET exercise paradigm - this is the be careful with exercise, do not overdo exercise, do very small bits - followed by large amounts of rest - 'exercise' program.

(This is stuff that when we were healthy we would hardly call 'exercise'.)
 

Cort

Phoenix Rising Founder
Doing a bit too little than is optimal is not the same as kinesophobia which is what was being discussed.

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 agree completely and I think this is actually a major flaw in the document. While it does state that CFS patients should not engage in activities that exacerbate their symptoms - it does state that indirectly - I think it should be much more explicit about the fact that most people are overdoing it anyway. There's a HUGE pull even for people who are not working to overdo it. Just look at the energy demands of cleaning the house for a really ill patient. This is part of the energy management section but I agree it should be made much more explicit.