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

[Orla]

Excellent first post, a solitary soul :Sign Good Job: welcome to the forum :victory:

Regarding the 'underactivity' issue. I don't understand how it would be possible for anyone with ME do underdo it even if they wanted to. Most of us struggle to get the support we need: it's incredibly difficult to get disability benefits, wheelchairs, help with care etc. I know plenty of people with mild/moderate ME who really shoudn't be working, but are forced to because there's no way they'd qualify for benefits, I am more severely affected and have to push myself to get to bathroom since I can't get an electric wheelchair on the NHS or afford to buy one myself.

I really find this passage very worrying, as it's exactly the kind of thing many doctors could use to deny severe sufferers help. Why give someone a wheelchair when all they need to do is gradually increase their excercise?

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.

 

[justinreilly]

Every Day Counts

Every day counts. Every day that goes by without effective treatment or at least societies' effectively taking care of their citizens with ME is 46,575 person-years of disability and suffering by ME patients around the world (17 M pwME x 1 day / 365 days in a year = 46,575 years of suffering for every day that goes by).

There has to be some substantial progress made every business day by CAA and I don't mean just creeping along with the Research program and its little pilot studies. I mean not leaving the office until one of the articles on the website is overhauled to the satisfaction of patients, or having lobbied one national publication so hard it is moving on getting a story on the whole ME scandal to press or getting a commitment from one congressman to fight for us until we get help. Every day wasted is a tremendous opportunity frittered away.

 

[jspotila]

But they don't do anything. The most we get is them "bending down" (Cort's words) to pretend to listen to us and some mollifying words, and then they get back to what they were doing before.

Perhaps I should not respond to this because of my own physical state at this time. But I will repeat what I have said many times and many ways on this forum:

I am not here to condescend to anyone, or to mollify anyone. I am here to listen and answer questions and think and participate. It is physically, emotionally, mentally and spiritually exhausting to read some of what is said here about me, the Association, the Board, Association employees, respected doctors and researchers who work with the Association on a variety of projects, our donors, and our fellow patients. If the Association truly did not give a damn, I would not waste my extremely limited energy to be here.

The CME course credits expired in October 2009 because Medscape would not continue them without new information. And the Association did not want to revise the materials because the Lombardi paper had just been published; both Medscape and the Association hoped that replication and validation efforts (including any federal studies) would be published swiftly and revision of the materials could be reconsidered then. The Spark site is part of a contract that is not yet over.

Constructive criticism and productive dialogue are always welcome. Attacks, dismissals, and insults are not. There are deep divides in this community and the CFS community at large, on more than one issue. No one is going to get their own way without compromise and building trust so we can move forward together. Is it only me that wonders if our common enemies delight in the rancorous airing of our differences in a way that seems to produce little progress for anyone?

I have been and continue to stand at the edge, hand out, ready to work with anyone who is willing to do the same.

 

[justinreilly]

perhaps the CAA could make its comments about CBT match the comments in the UK NICE guideline

In the context of ME/CFS, cognitive-behavioural approaches are not evidence-based to a level where they can be claimed to be specific ‘treatments’ – an unsurprising observation, given that the ‘syndrome’ diagnosis delivers a heterogeneous population widely believed to contain distinct clinical sub-groups.

The systematic review underpinning NICE Guideline 53 found ten randomised clinical trials on adults, three of these negative with the remainder showing mild-to-modest positive, though non-curative, results.

Recent overviews have confirmed this; a Cochrane review found 15 studies of CBT (including controlled clinical trials) for CFS/ME and took a more cautious view of the evidence and its limitations than the BMJ editorial authors, as did a second recent review. This latter meta-analysis of 13 clinical trials (representing 1,371 patients) found a very mixed bag of studies and reported an overall effect size that was small–moderate by usual standards. Not for nothing did NICE Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it did ‘not regard CBT or other behavioural therapies as curative or directed at the underlying disease process’.

That's pathetic that CAA's position on CBT is not as protective of patients as the UK NICE guidelines.

 

[Dolphin]

Extract from CME:

* Be aware that for patients who are severely deconditioned, it may be advisable to begin with a physical conditioning program, which is primarily anaerobic exercise, before introducing aerobic activities.
* Encourage patients who can tolerate greater levels of exercise to engage in movement therapies like yoga, tai chi, and qigong and light aerobic activity like short walks and swimming.

But what they are now recommending, as I posted earlier, is interval training.
(from: "Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis" by Todd E. Davenport, Staci R. Stevens, Mark J. VanNess, Christopher R. Snell, Tamara Little)

Short walks is not interval training (the interval training mentioned is is said to involve keeping the exercise under 2 minutes initially).

I've no problem people changing. Being willing to change is good.

(rest is sort of a repeat of things I've said before)

But everyone needs to recognise is that exercise programs for ME/CFS are experimental treatments.

Just because Staci Stevens recommends something at a particular point in time should be recognised for what it is - an experimental treatment. Individuals all around the world have theories about what "might" work.

And the thing about exercise programs with ME/CFS unlike for other conditions is that they can make peoople worse, just like experimental drugs can.

Doctors and others are unlikely to realise this (exercise is risky) and too likely to extrapolate from other conditions to think that exercise will increase energy and have a myriad of other benefits e.g. help mood, pain, etc. Especially when often these benefits are claimed when mentioning exercise programs (there are some unsubstantiated claims in the CME for example).

 

[Dolphin]

She also knows that Dr. Klimas, Dr. Natelson and others who have behind us for years and have been researching the physiological aspects of CFS for decades support these programs for some individuals. None of them have ever stated they are cures. They have also couched their effectiveness in very limited terms.

Have Dr. Klimas and Natelson with all the studies they have published, published treatment trials of exercise programs? None spring to my mind.

I'm afraid I've found that doctors feel they need to recommend something to their patients. They are worried patients will do too little. So they recommend some form of exercise program. Doesn't mean there is much evidence that those exercise programs are particularly good or that they are superior to other management programs.

 

[Dolphin]

Dr Lapp clearly states on his website that his approach is a rehabilitation programme and patients will and do improve functionality.

Wesselly has seen thousands of patients .He is making interpretations based on his cognitive biases as everyone does.That is why we need scientific evidence.The CME does not contain any thus it is speculation.

Good point, Gerwyn.

 

[Dolphin]

Not to be 'snarky' I'd have to say 'so'?

Isn't this field is necessarily filled with speculation? Lets put it this way - if the CME only contained information on treatments that had been studied with regards to CFS it would've looked like the Sparks document. I thought the Sparks document turned out the way it did in part because the CDC wouldn't put anything on there that hadn't shown up in the scientific journals. I think that's one reason it was so CBT heavy. If you wanted to get away from 'informed speculation' - as you seem to imply? - that's what you're going to get.

Until we have more treatment trials all we have is the experience of doctors to guide us. You can discount that saying it's 'speculation' but that's all we have at this point

There are some treatment trials but they aren't highlighted much.

For example, the Jason et al (2007) study which found (if one uses the basic percentages) that
a pacing program
did better than
a CBT program (Wessely style - Deary from KCL came over and supervised it)
which did better than
Staci Stevens exercise program
which did better than
a relaxation, autogenic training and yoga group.

The severe did not take part in this trial.

Ho-Yen and Goudsmit have published on pacing (2009).
Leonard Jason has published on the energy envelope.

I agree that evidence-based can cause a problem.

 

[Dolphin]

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 speciaists give, exercise for ME/CFS should be one of them, if people insist on having them.

Mithriel

Sounds like sensible advice (as long as we don't assume that the specialist definitely will help - but it could be safer)

 

[Roy S]

And you never spin?
And you never dodge questions?
And the CAA has never made any big mistakes, the problem is that that people just don't understand?
And the problem is that people won't work with the CAA?

Perhaps I should not respond to this because of my own physical state at this time. But I will repeat what I have said many times and many ways on this forum:

I am not here to condescend to anyone, or to mollify anyone. I am here to listen and answer questions and think and participate. It is physically, emotionally, mentally and spiritually exhausting to read some of what is said here about me, the Association, the Board, Association employees, respected doctors and researchers who work with the Association on a variety of projects, our donors, and our fellow patients. If the Association truly did not give a damn, I would not waste my extremely limited energy to be here.

The CME course credits expired in October 2009 because Medscape would not continue them without new information. And the Association did not want to revise the materials because the Lombardi paper had just been published; both Medscape and the Association hoped that replication and validation efforts (including any federal studies) would be published swiftly and revision of the materials could be reconsidered then. The Spark site is part of a contract that is not yet over.

Constructive criticism and productive dialogue are always welcome. Attacks, dismissals, and insults are not. There are deep divides in this community and the CFS community at large, on more than one issue. No one is going to get their own way without compromise and building trust so we can move forward together. Is it only me that wonders if our common enemies delight in the rancorous airing of our differences in a way that seems to produce little progress for anyone?

I have been and continue to stand at the edge, hand out, ready to work with anyone who is willing to do the same.

 

[Cort]

There are some treatment trials but they aren't highlighted much.

For example, the Jason et al (2007) study which found (if one uses the basic percentages) that
a pacing program
did better than
a CBT program (Wessely style - Deary from KCL came over and supervised it)
which did better than
Staci Stevens exercise program
which did better than
a relaxation, autogenic training and yoga group.

The severe did not take part in this trial.

Ho-Yen and Goudsmit have published on pacing (2009).
Leonard Jason has published on the energy envelope.

I agree that evidence-based can cause a problem.

Well yes. I would point out that they all showed some benefit. I assume that the really severely ill did not take part in this trial or indeed any treatment trial.

Again I'm going to note -- actually I'm not going to note anything....I am the exhausted by this thread - its been beaten to death. I think that I've shown that the CME has a very mild, carefully written 'exercise' program that is is designed NOT to send patients into a flare and that it is not like the GET programs patients are used to but my efforts to illustrate that have apparently failed. So - I'm done.

I'll go on to something else controversial I'm sure

 

[Cort]

and completely baffled

The systematic review underpinning NICE Guideline 53 found ten randomised clinical trials on adults, three of these negative with the remainder showing mild-to-modest positive, though non-curative, results.

Recent overviews have confirmed this; a Cochrane review found 15 studies of CBT (including controlled clinical trials) for CFS/ME and took a more cautious view of the evidence and its limitations than the BMJ editorial authors, as did a second recent review. This latter meta-analysis of 13 clinical trials (representing 1,371 patients) found a very mixed bag of studies and reported an overall effect size that was small–moderate by usual standards. Not for nothing did NICE Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it did ‘not regard CBT or other behavioural therapies as curative or directed at the underlying disease process’. Gerwyn

I am completely baffled by your statement Gerwyn. Where does the CFIDS Association or Dr. Bateman state that behavioral therapies are curative or directed at the underlying disease process? They simply state to my recollection that they can help with some symptoms and, in some cases, enhance some functionality.


Nowhere do they state that CBT is curative. They don't even state that in the SPARKS documents. If you can't find where the CME says CBT is curative then I ask you in the spirit of honest discourse to remove your statement and, quite frankly, apologize to them. I ask Justin to do the same. If you're going to make this inflammatory of a comment please provide the offending passage in quotes.

Is this where it is?

Studies of CBT in CFS show improvement in function and symptom management but very limited effect on pain and fatigue.

Maybe its here - where they talk about managing CFS not treating it?

CBT has been shown to be effective in managing CFS in small, short-term trials.[82] CBT may help CFS patients develop constructive coping strategies, better manage symptoms (not make them go away), improve their level of function (not fix it), and enhance their ability to perform activities of daily life (not return them to health).

That sounds pretty 'small to moderate' to me -as you reported that the Cochrane report put it. They did say 'small to moderate' didn't they? That sounds like something a little positive does it not?

Maybe its in the emphasis on pacing rather than psychological factors. Would rather have a program based on psychological factors?

Recommend CBT programs that focus on developing individualized activity programs that incorporate pacing and graded activity, and on coping behaviors, rather than programs that focus primarily on psychological factors.

Maybe its in the part where they acknowledge that other types of CFS that do not tailor themselves to individuals activity levels make people worse. They're obviously referring to the UK - which we've just discovered is more enlightened than the US in this area.

Be aware that increased symptomatology is the main reason cited for discontinuing CBT. This may be avoided if a paced, personalized plan is followed and activities are tailored to the individual's capabilities.

But how could it be that when the CAA is WORSE than NICE - which comes from the hotbed of CBT.

So where is it? Where are the statements that CBT is curative?

 

[Cort]

Here I go again.

Extract from CME:

But everyone needs to recognise is that exercise programs for ME/CFS are experimental treatments.

Just because Staci Stevens recommends something at a particular point in time should be recognised for what it is - an experimental treatment. Individuals all around the world have theories about what "might" work.

And the thing about exercise programs with ME/CFS unlike for other conditions is that they can make peoople worse, just like experimental drugs can.

Doctors and others are unlikely to realise this (exercise is risky) and too likely to extrapolate from other conditions to think that exercise will increase energy and have a myriad of other benefits e.g. help mood, pain, etc. Especially when often these benefits are claimed when mentioning exercise programs (there are some unsubstantiated claims in the CME for example).

I understand what you're saying about experimental treatments and I understand that you don't like the idea of any kind of exercise program being present but are you suggesting that the CAA's and Dr. Bateman's exercise or activity program or whatever you want to call it - will cause doctors who read it to put CFS patients on dangerous exercise programs that will cause them to crash?

I ask you that because my experience of reading the program is directly the opposite. My experience is that doctors who read that will recognize that CFS patients CANNOT engage in regular exercise programs, that whatever exercise they do do must be done in very small amounts and it must not cause their symptoms to become exacerbated.

If you do happen to answer the above question 'Yes' please show me where you think document will lead to doctors putting patients on dangerous exercise programs.

 

[Gerwyn]

Here I go again.



I understand what you're saying about experimental treatments and I understand that you don't like the idea of any kind of exercise program being present but are you suggesting that the CAA's and Dr. Bateman's exercise or activity program or whatever you want to call it - will cause doctors who read it to put CFS patients on dangerous exercise programs that will cause them to crash?

I ask you that because my experience of reading the program is directly the opposite. My experience is that doctors who read that will recognize that CFS patients CANNOT engage in regular exercise programs, that whatever exercise they do do must be done in very small amounts and it must not cause their symptoms to become exacerbated.

If you do happen to answer the above question 'Yes' please show me where you think document will lead to doctors putting patients on dangerous exercise programs.

My experience is that drs scan read looking for particular things and filter out all things they dont deem important.This is the only way they can deal with the vast amount of information hurled at them.They are very likely to focus on excercise and ignore the fine detail with potentially dire consequences

 

[Dr. Yes]

Here I go again.

"The very definition of insanity is to keep doing the same thing over and over again, expecting different results."

​

I understand what you're saying about experimental treatments and I understand that you don't like the idea of any kind of exercise program being present but are you suggesting that the CAA's and Dr. Bateman's exercise or activity program or whatever you want to call it - will cause doctors who read it to put CFS patients on dangerous exercise programs that will cause them to crash?

YES!!!!

(Ding Ding Ding!!!!)

Finally, some progress!

Better late than never! Perhaps the 'dead' horse still lives.

Wait...uh oh...

If you do happen to answer the above question 'Yes' please show me where you think document will lead to doctors putting patients on dangerous exercise programs.

I don't have to show you anything, for the answer lies curled within your own question. Tom wasn't merely saying that he doesn't "like" the idea of any kind of exercise program being included, I believe he was saying NO exercise program should be included because ANY exercise program is potentially HARMFUL to many patients! Yes, EVEN Dr. Bateman's! As you have (I Dearly Hope) read in countless testimonials from your fellow companions in Disease, many of them less fortunate in overall condition, ANY FORM OF EXERCISE, or of GRADED ANYTHING, can potentially be harmful, ESPECIALLY for the severely affected (and there are a lot of us Cort; you and I seem to move - well you move, I just lie down - in different circles...).

I'm fairly confident that Dr. Bateman herself would not apply a general recommendation like that to a patient like say, yours truly (I hope not anyway..:worried. But I don't get to see Dr. Bateman, she's off in Mormon country somewhere, and Klimas is in Gator Country, and Lapp is in hillbilly country or something, so I have to settle for Joe Doctor most of the time. Joe doesn't read stuff the way you do Cort, nor the way I do, in fact he doesn't like to read at all now that he's out of med school and has all his board certifications. Joe isn't all that smart, not like Dr. Bateman, and he isn't all that caring, unlike Dr. Bateman. He has his own not-very-smart opinions on CFS that involve "oh god not one of those", something about women and hysteria, and a bit of stuff his psychiatrist friend told him over lunch. So when he sees the word "exercise" all he thinks is "alright Dr. Bateman, whoever you are, I can take it from here" and the rest is, as they say, history. Unfortunately, mine. And that of a hell of a lot of people on this forum.
​

​

I ask you that because my experience of reading the program is directly the opposite. My experience is that doctors who read that will recognize that CFS patients CANNOT engage in regular exercise programs, that whatever exercise they do do must be done in very small amounts and it must not cause their symptoms to become exacerbated.

Wait a minute now hombre, that statement is not clear. You use the word "experience" first to mean your "experience of reading" their programs, then use it to mean your "experience" = doctors will recognize that we can't do regular exercise. Are you saying that you have ACTUAL experience with doctors who have ACTUALLY read those VERY materials (CAA/Bateman) and they have ALL (how many doctors have you seen who read this stuff, anyway??) become enlightened as you described? Or are you using the term hypothetically (and incorrectly) to mean that you THINK doctors who read this will become so enlightened?

My experience with doctors has been bad enough (did I mention Joe?) that most of them wouldn't even read the CAA literature anyway, and even if they did they would see the words "graded" or "gradual" + "increase" together with "activity" and "deconditioning", and then it's "ah yes, that's what I thought"... And the prescription is a graded kick in the ass with an assist by a psychologist or psychiatrist (prompted by the mention of "cognitive behavioral therapy"), with a general refusal to be very helpful (if at all) with disability forms, requests for wheelchairs, etc (why do I need, say, an electric wheelchair if I can gradually increase my activity such that, by God, I should at least be able to push one myself..). Now don't tell him he's missing the good stuff in that literature, Cort, or missing the nuance or the overall point, because he's a busy man, he has other patients to see, and he doesn't have time to read the fine print.. Besides, he already has his own framework built up from years of clinical experience, young man, and this document only reinforces his belief that all I need is a graded kick in the ass after all.. There's nothing in there about the SPECT scans or smoldering viruses or whatever I keep babbling about, and.. Oh, he's sorry, he has to see another patient now.

And that, in a bit of hopefully informative hopefully humor, is the problem. Most of us aren't beating any damn 'dead horses' here; we are fighting to NOT wind up about as dead as dead horses, wherever we can and however we can. Trouble is, some folks who will remain nameless (Cort and the CAA and.. who's that riding in?? Say it ain't so!!) seem to have developed a mental block in these discussions. So I thought I would try a different method. In the past I have found some of you folks have broken senses of humor, but I think it is a very effective medication and communication tool, in the right hands. Which rules me out.

Oh well. Spam away, Mr. J!

 

[lansbergen]

Dr Yes wrote: I have to settle for Joe Doctor most of the time. Joe doesn't read stuff the way you do Cort, nor the way I do, in fact he doesn't like to read at all now that he's out of med school and has all his board certifications. Joe isn't all that smart, not like Dr. Bateman, and he isn't all that caring, unlike Dr. Bateman. He has his own not-very-smart opinions on CFS that involve "oh god not one of those", something about women and hysteria, and a bit of stuff his psychiatrist friend told him over lunch. So when he sees the word "exercise" all he thinks is "alright Dr. Bateman,
whoever you are, I can take it from here" and the rest is, as they say, history. Unfortunately, mine. And that of a hell of a lot of people on this forum.

Now don't tell him he's missing the good stuff in that literature, Cort, or missing the nuance or the overall point, because he's a busy man, he has other patients to see, and he doesn't have time to read the fine print.. Besides, he already has his own framework built up from years of clinical experience, young man, and this document only reinforces his belief that all I need is a graded kick in the ass after all.. There's nothing in there about the SPECT scans or smoldering viruses or whatever I keep babbling about, and.. Oh, he's sorry, he has to see another patient now.


Good points.

Now I am going to throw in something. I pushed and pushed untill I was dying. I wonder why I didn't learn from the collapses. In my live before I was struck whith what I thought at the time was a very bad case of flu, I would quickly have picked up the warningsigns and learned from the flare ups. Getting worse after every flare up should have made me stop pushing. Why did the warningsystem not function as it shoud have?

 

[Roy S]

Sorry folks

Hey Cort, I'm still waiting for help. I first asked over a month ago:

http://www.forums.aboutmecfs.org/sh...rums-Post-your-problems-questions-here./page9

OK, carry on.:Retro smile:

 

[Cort]

I don't have to show you anything, for the answer lies curled within your own question. Tom wasn't merely saying that he doesn't "like" the idea of any kind of exercise program being included, I believe he was saying NO exercise program should be included because ANY exercise program is potentially HARMFUL to many patients! Yes, EVEN Dr. Bateman's! As you have (I Dearly Hope) read in countless testimonials from your fellow companions in Disease, many of them less fortunate in overall condition, ANY FORM OF EXERCISE, or of GRADED ANYTHING, can potentially be harmful, ESPECIALLY for the severely affected (and there are a lot of us Cort; you and I seem to move - well you move, I just lie down - in different circles...).

Where does the CME say that exercise is not potentially harmful? I'm trying to refer to the CME as much as possible. If you suggest that anything I said or the CME says suggests that exercise is not potentially very harmful then, honestly, you're doing me a HUGE injustice. You really are. I have noted many times my inability to engage in real exercise and I have directly quoted sections right from the document many times that warn about exercise. Did you not read those?

The fact that this is a doctor to doctor communication, hombre and that doctors who read it will come away with the understanding that 'exercise' as they know it is VERY HARMFUL to CFS patients. What I'm saying is that doctors who read the CME

• will finally understand that exercise can have terrible results for CFS patients
• will finally understand that CFS patients should not engage in aerobic exercise
• will finally not ask CFS patients to engage in anything that exacerbates their symptoms or makes their health worse; ie will not ask you to do what other doctors have done
• will finally understand that any 'exercise' CFS patients engage in should be very, very light, ie a few minutes of walking followed by more minutes of rest and that very seriously ill patients should not engage in any kind of 'exercise'

This is basically the cure for the exercise groupies in the medical profession. Basically that any Doctor who reads this will NOT treat you as you've been treated before. They will not ask you to engage in exercise that harms you. In fact they will treat you and exercise with kid gloves.

And no, since they are reading a program which details the problems associated with exercise, no they don't have to worry about 'nuances' - all they have to do is read a short easily digested program. That's why it's there - to easily inform doctors who are interested in CFS about it.

This is basically the program that you and I and others have been waiting for....and you've just smeared it, Dr. Bateman, myself, Dr. Lapp and all the others, all over the map. Well done, Dr. No.

Being humorous is fine. Purposefully misreading my comments and then ranting on them, for the pleasure of all, is certainly not fine in my book.

 

[Martlet]

Moderator:

Roy, I am deleting your last cartoon for two reasons. Firstly, it was not even remotely funny but in fact quite offensive. Secondly, animated images such as that can be very disorienting for ME/CFS patients.

Everyone - Please tone down the rhetoric. Because someone holds a different point of view does not make them stupid. It simply means they have a different experience, just as valid as yours. I don't want to have to close this thread but will unless it moves on to something more productive.

 

[Cort]

From the CME

This is a good program. Its not perfect but it presents a huge step forward for us in the medical community. If you choose to mischaracterize it in your zeal to get the point across that exercise can and often does have very serious consequences, then so be it. But you ARE doing that. The program is very careful to get that point across. You're taking a good program and trashing it and smearing the reputations of those involved in it.

There's nothing in here that suggests Drs. will push patients to exercise. Its a very mild program and is tailored to an individuals condition.

I'll say it again....Doctors who read this program - will understand that exercise is a huge problem for CFS. Any 'exercise' they suggest will not make patients worse because everything is couched in the need not to exacerbate ones symptoms.

most healthcare professionals have grossly misunderstood the level of exercise CFS patients can tolerate

Both experience and scientific studies have shown that people with CFS have an extremely limited ability to exert, and overexertion triggers an exacerbation of symptoms that may last for hours to weeks.... Clinicians should not recommend traditional exercise regimens. Activity plans and therapies should be focused on meeting activities of daily living and improving function.

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. In most cases, this will be extremely low

Avoid overexertion and underexertion, both of which have adverse medical consequences.

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] 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]

I do agree that the 'graded exercise' section is problematic because it presupposes that progress will be made.

This, for instance, is not good:

Advise deconditioned patients to limit themselves to the basic activities of daily living until they have stabilized. Several daily sessions of brief, low-impact activity can then be added, such as a few minutes of stretching, strength exercises, or light activity like walking or cycling.

because it presumes that they will stabilize and then can start walking. That is unrealistic. I can't imagine why they put cycling in there because even I cannot 'cycle'. The same section of the program clearly states, though,

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

That undergirds everything. That is very different and that is a key to this program. Stop if it makes you worse.