Article: Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise — The Sick Times

[Chandelier]

Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times

An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to their trial registration, while a handful excluded participants who experience it.

thesicktimes.org

Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say​

Written by Simon Spichak – November 21, 2025

Key points you should know:

• A swath of low-quality exercise studies are used as justification that the intervention works for Long COVID; however, the studies included in those analyses neglected to account for PEM.
• Less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to their trial registration, while a handful excluded participants who experience it.
• Some experts question the utility of these trials for Long COVID. However, the principal investigators running RECOVER-ENERGIZE, which is testing cardiopulmonary rehabilitation, declined to explain the rationale behind their study.
• Experts say it is important to use multiple measures, including surveys and a two-day cardiopulmonary exercise test, to track PEM. Researchers say it’s important to track PEM for up to a month after the trial ends.
• Despite the disproportionate focus on it as an intervention, exercise does not mechanistically connect the main pathophysiological findings or suspected mechanisms that leading Long COVID researchers are pursuing.

 

[BrightCandle]

Why would they care about PEM? The definition of the condition does not include PEM as a required or an optional symptom. This is part of the problem with the WHO, CDC and everyone else’s definition of the disease, they haven't updated them to say "well actually up to half meet the definition of ME/CFS and the others have chronic fatigue with neuro cognitive symptoms" so at this point its all just "anything after Covid we can't explain by existing diseases" (ignoring that ME/CFS already exists because *reasons*).

That last bit, that ME/CFS is somehow a disease that isn't otherwise recognised really irks me. The WHO definition is Long Covid is post Covid not explained by an existing condition. Which removes diabetes and strokes, heart attacks and all the other things we have seen associated with Covid infections and the pandemic so far, they get excluded. Yet ME/CFS patients haven't been excluded and honestly I can't justify that unless they all literally just think its a made up thing and isn't actually an existing disease, including at the WHO, CDC et el.

 

[Chandelier]

The definition of the condition does not include PEM as a required or an optional symptom.

Exactly!
Simon Spichak, the author of this article, wrote about the Canadian Long COVID guidelines (and Paul Garner‘s involvement) earlier this year:

Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” - The Sick Times

Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner.

thesicktimes.org

Edit: previous discussion on S4ME:

Post in thread 'News from Canada'

Jul 8, 2025

The Sick Times has a story on the "contradictory" and "deeply concerning" Canadian LC guidelines:

https://thesicktimes.org/2025/07/08...idelines-contradictory-and-deeply-concerning/

Includes some FOIed emails from Paul Garner, who was trying to influence the process:

https://www.documentcloud.org/documents/25980905-2025-gr-001-2025-05-28-disclose-documents-letter-1/

• Nightsong

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[rvallee]

As best as I can tell from every awful LC rehabilitation, it doesn't even matter much because it makes no difference anyway. The only relevant issue is that without PEM it won't do harm, but it won't do any good either. There isn't a single trial that can actually provide evidence of meaningful benefits compared to doing nothing at all. WTF would exercise rehabilitation have to do with tinnitus or loss of smell or any of the many other issues found in LC?

The whole thing is a giant clusterfuck. All of it. Medicine is plainly showing that it itself is a major problem in how we address and deal with illness. With experts like this, well, it just opens up the whole thing to the kind of massive enshitiffication that we are seeing in the US, where they are pretty much doing to everything what has been done to us.

 

[Utsikt]

The whole thing is a giant clusterfuck. All of it. Medicine is plainly showing that it itself is a major problem in how we address and deal with illness. With experts like this, well, it just opens up the whole thing to the kind of massive enshitiffication that we are seeing in the US, where they are pretty much doing to everything what has been done to us.

Yeah, that’s more and more what I’m thinking. When there are no good standards ro compare to, even quacks will look good.

 

[poetinsf]

I think the root of the problem is that they didn't quite believe ME/CFS is real. So, they had to treat this post-viral thing called LC as something new and therefore start with "clean slate". The upshot is $1.4b down the drain repeating the same thing that went on for the past 40 years.

 

[BrightCandle]

I think the root of the problem is that they didn't quite believe ME/CFS is real. So, they had to treat this post-viral thing called LC as something new and therefore start with "clean slate". The upshot is $1.4b down the drain repeating the same thing that went on for the past 40 years.

They clearly didn't believe ME/CFS was real. The WHO and CDC define Long Covid as symptoms 3 months after a Covid infection not explained by another condition and then everyone ends up running research on people that meet the clinical definition of ME/CFS! Some of the researchers even expressly select on the basis of PEM as a key symptom. If we applied strictly the WHO definition there would be people left, there is quite a lot of people who have symptoms but don't meet the definitions of ME/CFS but it would be a lot less people. I can not justify why ME/CFS wasn't excluded, or rather it was in that it was never named ME/CFS in the Long Covid research, but it also wasn't because they are clearly often studying people meeting the definition without officially saying so.

 

[Sean]

I think it is very clear now (and frankly was from fairly early on) that a very large chunk of LC patients, maybe the majority, have ME/CFS. Not something resembling or related it, but actually it. I see no fundamental difference yet in the evidence. To the contrary.

I do see the medical profession, or at least a still very powerful element within it, desperately trying to pretend they are different, at least in a way that justifies them continuing to regard ME/CFS patients as undeserving and to be abandoned to the psychosomatic cult, again. In no small part because they simply can't face up to what they have done to ME/CFS patients, and which more than a few of them have every intention of going right on doing.

 

[Utsikt]

I think it is very clear now (and frankly was from fairly early on) that a very large chunk of LC patients, maybe the majority, have ME/CFS. Not something resembling or related it, but actually it. I see no fundamental difference yet in the evidence. To the contrary.

That really really depends on how you define LC.