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

[Kiristar]

But these are all irrelevant side issues. It is the basic structure of the trials that makes them dead before they start.

Is it worth someone writing a dear editor letter making this point?

 

[Jonathan Edwards]

Is it worth someone writing a dear editor letter making this point?

If people aren't up to speed on the basics it is a bit hard to see how one is going to make any impact.

 

[Utsikt]

The most elegant demonstration of the real problem, which should be intelligible to any general audience, is the wonderful video of the PACE trial by the late much-loved Graham McPhee. No jargon, just the reality of wishful thinking.

Video here if anyone are interested:

https://www.s4me.info/threads/video-the-pace-trial-a-short-explanation-graham-mcphee.4669/

Highly recommended!

 

[rvallee]

But these are all irrelevant side issues. It is the basic structure of the trials that makes them dead before they start.

Those structures are standard. That's the problem, it can't be acknowledged that there are problems here without admitting there are problems everywhere with all trials using the same basic structure. It would invalidate well over half of so-called evidence-based medicine, almost every trial except big pharmaceutical trials.

Which is exactly what serious academics are expected to do. Alas, we instead find nothing but digging the hole deeper. This basic structure basically works like casino slot machines that give you enough rewards to keep on playing just a bit more, and just one more, or maybe a few more, a win is just right around the corner I put so much money in that machine it has to pay off!

 

[Sean]

If people aren't up to speed on the basics it is a bit hard to see how one is going to make any impact.

Nonetheless it is important to get this stuff on the formal record. Every little bit acts as another click of the ratchet to further constrain the excuse that nobody tried to point it out.

Those structures are standard. That's the problem, it can't be acknowledged that there are problems here without admitting there are problems everywhere with all trials using the same basic structure. It would invalidate well over half of so-called evidence-based medicine, almost every trial except big pharmaceutical trials.

Yep. The rot is very deep and wide.

 

[Amw66]

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.

https://www.s4me.info/threads/dsq-pem-survey-depaul-university-open-october-2025.46456/

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.

This.