Opinion Researchers See Hope in Symptom-Guided Exercise for Long COVID With Postexertional Malaise, 2024, Bock (in JAMA)

News From the JAMA Network
April 26, 2024
Researchers See Hope in Symptom-Guided Exercise for Long COVID With Postexertional Malaise
Anna Bock
Article Information
JAMA. Published online April 26, 2024. doi:10.1001/jama.2024.7255

Free full text at
https://jamanetwork.com/journals/jama/article-abstract/2818254

 

I don't understand what these people are even on about. If they did a HIIT workout and experienced no PESE, they don't have PESE...it's fine for them to exercise.

Addendum: And when these people talk about PEM, they often have no idea what PEM even is. They're so narrowminded that they think an activity only counts towards PEM if it passes their definition of "hard" enough. They think only exercise, often intense exercise, causes PEM. Shopping gives me PEM. Walking up a hill gives me PEM. For some people, walking up a flight of stairs causes PEM. They have no clue.

They don't understand that if your ADLs give you PEM, your desired ADLs are beyond the limits of your physical capabilities, so you should spend what energy you have on life, not exercise.

 

Save us from researchers seeing hope.

I see hope in buying a lottery ticket, but it is hardly a [viable] or rational financial strategy.

[edited to correct a bizarre autocorrect that I missed when writing the post]

 

The study was motivated by concerns about the potential harms of restricting or stopping exercise altogether.

“We are not saying that the exercise can treat post-COVID,” Tryfonos said. “But we know that not only in post-COVID, in any other disease, if you stop doing exercise in the long run, it’ll affect your body, it’ll affect your heart, it’ll affect your vessels. It’ll affect pretty much everything.”

They should get a taste of what PEM feels like.

 

Since when did not having an 'exercise programme' mean stopping doing anything?

In addition to: DO MORE
and
DO LESS

There is: Just take things how it works for you. We aren't needed here.
Symptom guided living, not exercise.

 

I believe this is an editorial based on this study, Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition A Randomized Crossover Clinical Trial, 2024, Tryfonos et al

 

The same old nonsense as always. The small study doesn't support this, but it's said anyway, because exercise was already obsessively pushed, though they frame this as though there has been a full stop on all recommendations, even though it clearly does not treat or improve the condition, fundamentally misunderstands PESE, from a position that assumes they do.

Obviously if someone doesn't struggle with exercise, doesn't have PESE, then there is nothing to say either way. But the problem is that most with LC do, as all of us with ME/CFS do, and they still don't understand that the E stands for exertion, not exercise, and that people are barely capable of doing the normal activities of daily life, or that even if they can, they're seriously threading water and have to trade off between important things all the time, adding exercise would only demand more trade-offs.

But the message will be spread far and wide anyway, about how exercise is good for everyone with PESE, you just have to be careful about it, which no one will because they don't understand it, and there is no basis to claim that it provides any significant benefits. It's all to avoid deconditioning, a fear about a future problem that ignores the current problem, and is definitely a serious concern long term, but only in failing to develop any effective treatments, which is what's happened to us for decades, who have all suffered from since, despite being told to "just exercise".

You can't have a more textbook example of doing the same thing again and again and expecting different results. Because really they expect the same results: writing down whatever they prefer to have happened, rather than what actually happened. And so the failure loops again, out of a small study that doesn't even support the claims here, because they still don't understand the basics.

Tone deaf and incapable of properly handling feedback in a learning process. But they boast of teaching people how to do things they don't understand themselves. Good grief this is mediocre. 'Hope' in a health care context is solidly on its way to losing all meaning, and getting a negative connotation, just like 'holistic' now simply means pseudoscience.

 

Heading seems a tad optimistic - "researchers-see-hope-in-symptom-guided-exercise" --- surely they'd need a trial ?(and not the usual crap!)!

 

Yeah, it's such a strange paper. The people who reported PESE turned out to not have PESE after all, and yet it recommends symptom-guided exercises (aka pacing if you consider all activities are exercises). It would've been more productive for them to look into why PCC cohort who reported PESE did not exhibit PESE. Anybody with real PEM problem would've at least reported much worse fatigue in VAS scale and questionnaires, 48 hours after HIIT, MICT or ST. If 10-100w step for 1min each could produce PEM lasting 10 days on average ME/CFS patients, 5 x (1 min at 90% max + 1 min rest) would been a killer.

 

I feel like I'm in wacky world reading this, knowing it's serious scientists in a serious journal. This seems like such an obvious attempt to cloak "PEM isn't real" in some sciencey words to make "you need to exercise" seem like a good conclusion. Like the logic seems to be completely missing. Because I had the same conclusion upon reading it as RedFox and poetinsf:

Please make this make sense. I didn't thouroughly read every word yet, so I honestly think there must be something I missed that makes the conclusion at least halfway logical.

Edit: Okay, swartz on Reddit gave an explanation that could plausibly be what they were studying: that they recruited people with PEM induced by intense exercise, and showed that they don't have PEM from light exercise, so those people should be encouraged to do light exercise.

I think it's still a poor study since I think most people who can do light exercise are already doing light exercise. But at least not completely wacky world.

 

One comment and response so far on the JAMA page for the referenced paper.

Comment includes —

Lead author response includes —

 

They weren't light exercises. Not sure about PCC with PESE, but 5 x 1 min @90% is more than average ME/CFS patients can handle. I claim to have recovered and I can only tolerate 4 x 1 block jogging at leisurely pace when I'm stable at home. That's 4 x 50 sec @ 60-70%. When I'm under the weather, I can't even tolerate that.

We don't know what they mean by "this population of patients". They seemed to be copping out by saying "none of them were hospitalized", but there are plenty of people not hospitalized for the infection but nonetheless became seriously ill with LC or ME/CFS. So, their problem could be that of definition, which unfortunately is all too common in post viral illness.

(Edit: changed 25 sec to 50 sec. I miscalculated, and the actual measurement was 50 sec).

 

I haven't read more than the abstracts, but here are the two studies they reference:

Use of symptom-guided physical activity and exercise rehabilitation for COVID-19 and other postviral conditions

Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome

 

They don't understand the risk, though. Or simply ignore it. Or dismiss it. Either way, they can't do a reward/risk evaluation without knowing the risk, which here in the worst case is lifelong total disability. It's like dividing by zero, it's invalid. That risk is simply rejected, even though it's widely reported, and in large part studies like this will never see it, as they admit themselves, because they're relying on the mildest patients out there, in artificial settings. I used to be mild, until I wasn't. So many long haulers have seen the same fate.

And they contradict themselves. They speak of the risk of deconditioning as the reason for exercise. But to avoid deconditioning doesn't require to progressively increase intensity, all it takes is a minimal level of regular activity. So this is a very deviously-crafted argument that says one thing, but uses clear dog whistles (things only some can hear) to mean another.

They simply use no reasoning here. They speak of a risk of deconditioning, but without actually assessing it (as usually it doesn't validate it), let alone differentiating with prolonged fatigue and PEM, aka ME/CFS. But it's at worst a potential risk for the future, one that isn't mitigated by a progressive increase in intensity, rather where a minimal level of activity is plenty enough. They caution that it doesn't treat PEM, so then why recommend this? When it doesn't treat deconditioning either, a future probable problem, while ignoring the current and very disabling problem, PEM/PESE?

I've seen enough of what MDs think to see through this. This doesn't come from a good place, it's just the same old weak argumentation for a different problem while they ignore, dismiss or misunderstand the real problem. It's the same old trope of "there's nothing wrong with you, you're just deconditioned and need to get over your fear of activity". I've seen this scenario hundreds of times already, it doesn't matter how they justify it.

 

I wrote about this one here: https://virology.ws/2022/12/20/tria...ts-with-post-exertional-symptom-exacerbation/

 

Wasn't there a study that showed that one group were able to do the extra exercise, but when activity data was studied it showed they were much less active, they gave up everything else to exercise?