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.​
​
(...)​
​
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?
Click to expand...
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
Click to expand...

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.
 
Andy said:
<sigh>
Click to expand...
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.
Click to expand...
 
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.
Click to expand...
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.
 
Hoopoe said:
intolerance of workload
Click to expand...
This is also commonly used in french.

Intolerance à l’effort
Malaise post effort

intolerance of workload/effort

and PEM actually translates to Post Workload/Effort Malaise

I think it’s more accurate than exertion.
But also “effort intolerance” sounds like a made up term for lazy people :arghh:
 

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.
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom