Medscape article: No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Wyva

Wyva

Senior Member (Voting Rights)
by Miriam E. Tucker

“We face a mismatch around physical activity between established medical practice and what the evidence actually shows. For decades, medicine has worked from the idea that physical activity promotes health and recovery…This underlying idea continues to underpin many activity-based interventions for people with ME, based on the expectation that more activity will lead to improvement. However, this assumption directly conflicts with the core feature of ME, exertion intolerance, or post-exertional malaise,” Wormgoor said in her introduction.​
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Even among the studies that have recruited individuals with PEM, there is still variation in case definitions. Now, under the leadership of Leonard A. Jason, PhD, the IACFS/ME is working on developing a new consensus research case definition for ME/CFS— which would likely be narrower than the clinical diagnostic criteria — with the aim of better standardization across studies. This definition will include PEM, cognitive impairment, fatigue, and unrefreshing sleep among other criteria, and will likely specify other aspects such as illness severity, duration, course, and comorbidities.​

Full article: https://www.medscape.com/viewarticl...graded-exercise-myalgic-2025a1000tuf?form=fpf
 
If someone is able to increase the amount of exercise they do in a week, at the cost of reducing other activities, this is not an indicator of reduced disability. At best it represents an shift towards an overall healthier lifestyle, where unimportant sedentary activities are replaced by physical activity. At worst it represents a neglect of other, more important things.

If the increase in activity is accompanied by an increase in symptoms it's likely unsustainable, and the appearance of improved function illusory.

It would only be a treatment if the total amount of activity went up, symptoms improved and this didn't come at the cost of neglecting other important activities of daily living.
 
It is very disappointing that this article comes to the right conclusion but appears to be completely unaware of the main reason for doing so - none of the studies showed reliable evidence for an effect regardless of diagnostic criteria. I find it astonishing that so many people don't understand the basics of trial methodology, including the CDC committee that started this hare in 2015.
 
Andy said:
So which is it, as those two things are not the same?
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Interestingly enough, Professor Scheibenbogen frequently uses Belastungsintoleranz when describing the hallmark symptom of ME/CFS:

AI translated:
Exercise intolerance as a typical symptom

tagesschau.de: An international congress on ME/CFS is currently taking place in Berlin. Let’s take a look at the patients — what kind of symptoms do they come to your consultations with?

Scheibenbogen: The clinical picture of ME/CFS is primarily characterized by what’s known as exercise intolerance. This means that even minor everyday activities — for example, taking care of oneself or going grocery shopping — are often too exhausting for patients and lead to a worsening of all symptoms.

These symptoms are diverse. Fatigue is not the only one — this illness also always includes pain, severe concentration difficulties, and circulatory problems. That means it is often impossible for patients to stand for longer periods, for instance to cook something to eat, because they then become dizzy.

This worsening after exertion can also cause the person’s condition to deteriorate not just for days, but for weeks — so that they often have to lie in a dark room. https://www.tagesschau.de/wissen/gesundheit/mecfs-post-covid-scheibenbogen-100.html
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Belastungsintoleranz is also used in the official practical guide for ME/CFS by the Charité: https://www.s4me.info/threads/news-from-germany.11006/post-651529
For example in this illustration.
 
I'm a native German speaker. Belastungsintolleranz doesn't mean exercise intolerance. They translate it that way because they think that the equivalent in English is exercise intolerance. In German there is different word for exertion intolerance so it's not that.

In my opinion a more appropriate translation in this context might be intolerance of workload. Which sounds strange in English but the concept is roughly that. Belastung means being subject to a burden, a load or weight.

PS: maybe in a medical setting it does mean exercise intolerance. But the term still has the connotation described above.
 
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Andy said:
<sigh>
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Well, the good news is that in their guide they explicitly differentiate the two terms but still, in interviews Professor Scheibenbogen often uses Belastungsintoleranz.

AI translated from the guide:
PEM and Exercise Intolerance: Terminology

Exercise intolerance generally describes a reduced capacity for exertion — that is, activities can no longer be performed to the previous extent, require greater effort, or cause symptoms that did not occur before.

Symptoms may appear directly during an activity, for example rapid exhaustion, loss of concentration, headache, etc. These symptoms may persist for some time after exertion, but afterwards the symptom level usually returns largely to baseline.

PEM (Post-Exertional Malaise), by contrast, is a clearly defined and characteristic symptom. By definition, it describes a delayed and prolonged worsening of all symptoms following exertion (lasting for days, weeks, or even permanently). PEM can be assessed using specific questionnaires.

According to the Canadian Consensus Criteria, PEM is typically required to last 24 hours or longer. Shorter-lasting PEM (<10 hours) that is less severe can also occur in post-COVID syndrome (PCS) or multiple sclerosis (Kedor et al. 2022; Cotler et al. 2018). In practical terms, this means that in ME/CFS, PEM generally persists until the following day. A questionnaire for assessing the severity, frequency, and duration of PEM can be found → here.

Exercise intolerance may occur in ME/CFS as well as in various other diseases (e.g. chronic cardiovascular disorders). However, severe PEM that persists until the next day is characteristic of ME/CFS.
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Hoopoe said:
I'm a native German speaker. Belastungsintolleranz doesn't mean exercise intolerance. They translate it that way because they think that the equivalent in English is exercise intolerance. In German there is different word for exertion intolerance so it's not that.

In my opinion a more appropriate translation in this context might be intolerance of workload. Which sounds strange in English but the concept is roughly that. Belastung means being subject to a burden, a load or weight.
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Yes, I agree, @Hoopoe, and it's actually a very good term, because it's not just 'exertion' intolerance that we suffer from, it's any load, or, anything that requires energy.
 

New Research Definition Under Development​

Even among the studies that have recruited individuals with PEM, there is still variation in case definitions. Now, under the leadership of Leonard A. Jason, PhD, the IACFS/ME is working on developing a new consensus research case definition for ME/CFS— which would likely be narrower than the clinical diagnostic criteria — with the aim of better standardization across studies. This definition will include PEM, cognitive impairment, fatigue, and unrefreshing sleep among other criteria, and will likely specify other aspects such as illness severity, duration, course, and comorbidities.
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Disappointed Leonard Jason is leading this as it very likely will mean all the symptoms that aren’t universal (or close to being universal), but maybe 50-70% of patients have, won’t be used. Such data can help strengthen criteria but from all I have picked up from him over the years, he doesn’t want in criteria.
 
Andy said:
So which is it, as those two things are not the same?
Click to expand...
You are of course right that “exertion intolerance” and “post-exertional malaise (PEM)” are not identical concepts. In this case, the phrase was used in the introduction of a talk at the IACFS/ME conference, where one can assume the audience is familiar with what PEM is. The intention was not to equate the two, but to use “exertion intolerance” as a concise descriptor of the characteristic functional limitation that results from PEM in the context of both challenging the general belief that activity promotes health and the presentation’s focus on activity-based interventions in ME/CFS.
 
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Jonathan Edwards said:
It is very disappointing that this article comes to the right conclusion but appears to be completely unaware of the main reason for doing so - none of the studies showed reliable evidence for an effect regardless of diagnostic criteria. I find it astonishing that so many people don't understand the basics of trial methodology, including the CDC committee that started this hare in 2015.
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My presentation focused on the methodological limitations underlying claims of effectiveness of activity-based interventions for ME/CFS. The journalist, Miriam Tucker, chose to highlight the fact that only one study applied appropriate diagnostic criteria. She did not go into the methodological issues in detail, partly because such aspects may be less relevant for the general Medscape audience, and partly at my own request, since these issues is thought be addressed more comprehensively in an upcoming paper.
 
Rodeworm said:
She did not go into the methodological issues in detail, partly because such aspects may be less relevant for the general Medscape audience,
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I understand that Tucker may have given a mislleading slant but why should methodological details be less relevant to a general Medscape audience? The diagnositc issues are a big red herring because they allow people to argue that there are nonME/FS chronic fatigue cases that might benefit from GET. Is the 'general Medscape audience' expected to go off and just prescribe GET for these? They also allow the BPS crowd to argue that the diagnosis of chronic fatigue has been gerrymandered.

Rodeworm said:
these issues is thought be addressed more comprehensively in an upcoming paper.
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But these issues have been scrutinised and exposed for a decade now. And they are so basic there wouldn't have been any need for that in the first place if the 'general Medscape audience' simply applied what they had been taught in medical school.
 
Jonathan Edwards said:
I understand that Tucker may have given a mislleading slant but why should methodological details be less relevant to a general Medscape audience? The diagnositc issues are a big red herring because they allow people to argue that there are nonME/FS chronic fatigue cases that might benefit from GET. Is the 'general Medscape audience' expected to go off and just prescribe GET for these? They also allow the BPS crowd to argue that the diagnosis of chronic fatigue has been gerrymandered.



But these issues have been scrutinised and exposed for a decade now. And they are so basic there wouldn't have been any need for that in the first place if the 'general Medscape audience' simply applied what they had been taught in medical school.
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"While some of the studies found positive short-term improvements, results were generally inconsistent. Moreover, Wormgoor pointed out that most of the studies reflected several other sources of bias, such as inadequate reporting of adverse events, treatment compliance, or dropout rates. Moreover, study participants generally had mild diseases because those more severely affected would not be able to participate."
 
I had another read the through the Tucker piece. It is disappointing that it is a string of off target arguments that miss the main point that open label trials with subjective outcome measures will be biased and that alone makes all the studies meaningless. There is no need to go in to any other details like other sources of bias or selection criteria. Subjective outcomes are fine as long as the study is effectively blinded to expectation. Another red herring.

And all the stuff about biological abnormalities in people with PEM is not justified because we don't have any such studies on people without PEM - no controls. CPET does not measure PEM. DecodeME found that people with PEM have a genetic signature but we don't actually know if selecting on PEM made a difference. There was no wider group to act as control.

ME/CFS science needs to move away from this sort of stuff that sounds like properly argued science but isn't.
 
Rodeworm said:
"While some of the studies found positive short-term improvements, results were generally inconsistent. Moreover, Wormgoor pointed out that most of the studies reflected several other sources of bias, such as inadequate reporting of adverse events, treatment compliance, or dropout rates. Moreover, study participants generally had mild diseases because those more severely affected would not be able to participate."
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But these are all irrelevant side issues. It is the basic structure of the trials that makes them dead before they start.
 
Studies like PACE are of course standard in psychological medicine circles, which is why this is such a scandal. Pretty much all non-pharmacologial therapy-based treatments have been justified by triaos as bad as these. Which is what the general Medscape audience needs to take to heart.
 
Rodeworm said:
You are of course right that “exertion intolerance” and “post-exertional malaise (PEM)” are not identical concepts. In this case, the phrase was used in the introduction of a talk at the IACFS/ME conference, where one can assume the audience is familiar with what PEM is.
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I don’t think we can make that assumption. If you take a look a the threads about the new DePaul questionnaire, what PEM is or isn’t is apparently not very well understood at all.

Rodeworm said:
The intention was not to equate the two, but to use “exertion intolerance” as a concise descriptor of the characteristic functional limitation that results from PEM
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The reduced ability to do thing when in PEM has two sources:
1) the increase in symptoms that makes doing things virtually impossible or very unpleasant
2) the lower threshold to do things before getting even more symptoms (exertion intolerance)

So exertion intolerance is not even comprehensive for the functional capacity aspect of PEM.
 
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