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

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.
 
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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]
 
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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.
 
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.
 
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:

RedFox said:
If they did a HIIT workout and experienced no PESE, they don't have PESE...it's fine for them to exercise.
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poetinsf said:
The people who reported PESE turned out to not have PESE after all
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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.
 
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One comment and response so far on the JAMA page for the referenced paper.

Comment includes —

In people with PEM, that I am aware of, a single session of PEM often results in increased malaise, but is otherwise tolerated. This is likely why patients, especially non-severe patients who are maintaining work and other responsibilities, may not relapse daily or weekly following a day of greater stress or effort, although they notice it. After all, they are able to continue going to work. For a more severe relapse-type of PEM, especially for non-severe patients, multiple days of stress and/or effort result in building PEM until a relapse event occurs. In more severe patients, this building of PEM requires less time and effort.

Did this study measure how fatigued patients felt at the end of a workday following the exertion? Perhaps if they exercise and then 48 hours later they come into your facility and and complete testing, their PEM is small, but if instead they had commuted to work, worked all day, dealt with stress, and returned to responsibilities that that their PEM would be much higher? Why were patients not subjected to multiple days of exercise or a combination of physical and mental stress? Perhaps additional exercise or routine stress in their lives would have amplified these differences.

I find it especially concerning that in this small study with patients with apparently mild PCC, the general recommendation is to go ahead and exercise because they appear to be healthy. I would expect a recommendation for further studies to confirm or expand upon these results. This is a controversial and politicized topic and a disservice to all those with post-Covid conditions.
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Lead author response includes —

It is true that we did not study the patients who suffered the most, which we acknowledge in the study. None of our patients were hospitalized and they had no other illnesses. Indeed, in the discussion, we call for further research on this condition and specifically point out that “our results should by no means be generalized to all PCC patients, and we are aware of the serious problems faced by many individuals”. Nevertheless, this patient population also deserves attention and is worthy of study as PCC has impaired their function, ability to work and quality of life (see baseline symptoms). The invited commentary states: “The article by Tryfonos and colleagues is, therefore, timely and necessary because it addresses an important topic in the debate surrounding patient acceptability and the therapeutic effects of different exercise modalities in the treatment of patients with PCC and their acute risks of developing PESE.”

Based on the findings, we maintain our position that a risk/reward analysis for this particular type of patient supports our recommendation to “cautiously incorporate exercise into rehabilitation protocols and adjust the intensity progressively, considering patients’ symptoms and abilities.”
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forestglip said:
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.
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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).
 
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The invited commentary states: “The article by Tryfonos and colleagues is, therefore, timely and necessary because it addresses an important topic in the debate surrounding patient acceptability and the therapeutic effects of different exercise modalities in the treatment of patients with PCC and their acute risks of developing PESE.”
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It's such a leap of logic isn't it? "We made these people exercise once, and they didn't end up incapacitated in bed. Therefore, we should give people like them a programme of repeated exercise, with the aim of fixing the symptoms they complain of."
Where is the link between 'exercise' and 'recovery'?

Absolutely about the cumulative effect. Somehow we have to make people, including sympathetic researchers, understand that PEM isn't just 'do a bit of exercise and 24 hours later you have PEM for 12 to 24 hours'. It doesn't work in that formulaic way. It depends on how severe your disease is, how demanding the exercise is, what amount of exertion you have been doing, whether you have an infection of some sort, and other things we don't understand yet.

I think it might even depend sometimes on whether you are stressed during the activity - I think adrenalin or some equivalent stress response can possibly counter or delay PEM. Just googling, that is an interesting idea, especially considering the recently published paper that was suggesting that phenylephrine (essentially adrenalin) improved cognitive performance in people with ME/CFS and POTS during an orthostatic challenge.
Google said:
According to the Endocrine Society, “adrenaline causes a noticeable increase in strength and performance, as well as heightened awareness, in stressful times.”

For runners, adrenaline is a nifty little hormone that does a lot. “This molecule helps increase force of contraction of the heart muscle, increase blood flow to working muscle—to a point—and reduce blood flow to non-working muscle and it activates the mobilization of substrate molecules to be used by those tissues,” says Allan Goldfarb, kinesiology professor at the University of North Carolina Greensboro. He adds that epinephrine also works with norepinephrine to “provide greater blood flow and control blood pressure.”

In general, it makes your body more efficient. A recent Harvard Medical School study, for example, found that epinephrine exposure, among other hormones, increased proteasome activity, a marker that the body is breaking down and eliminating ‘misfolded’ proteins that can cause disease if they accumulate.
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Links to the forum threads for those papers:
Use of symptom-guided physical activity and exercise rehabilitation for COVID-19 and other postviral conditions 2023 Ladlow et al
The abstract of that paper, which is all I can see, does not provide any evidence suggesting physical activity causes recovery in post-viral conditions.

Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort... 2022 Parker et al
No controls - definitely not evidence that the pseudo-pacing improved health.
 
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Based on the findings, we maintain our position that a risk/reward analysis for this particular type of patient supports our recommendation to “cautiously incorporate exercise into rehabilitation protocols and adjust the intensity progressively, considering patients’ symptoms and abilities.”
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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.
 
rvallee said:
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.
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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?
 
PACE dropping actigraphs for outcomes was one of its biggest sins, IMHO, because it prevented the collection of three critical data sets:

For the GET arm
1) fidelity to treatment
2) if patients were simply substituting the therapy for their normal daily activities and tasks, without doing any more overall

and for all arms
3) if patients' total activity levels changed.

These questions need much more scrutiny in rehabilitative, especially exercise based, studies than they have received thus far. I would even say that using robust means to answer these questions should be required in such studies.
 
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rvallee said:
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.
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Yes, it's some sort of magical thinking - sanctioned exercise will somehow fix us in a way that the activity that we have to trade off to do exercise won't. Even when the exercise is something as banal as walking.

Graded Activity Therapy was a thing for a while, but I haven't seen much of that lately. I suppose the psychosomatic crowd realised that to really manage activity they would have to have their trial participants and patients use wearable technology. And that would make it clear to everyone that, for people past the first few years of illness at least, not very many people were getting better. Something to look out for - is GAT still a thing?
 
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