Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise, 2024, Gloeckl, Scheibenbogen+

Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise: A Best Practice Proposal
Gloeckl, Rainer; Zwick, Ralf H.; Fürlinger, Ulrich; Schneeberger, Tessa; Leitl, Daniela; Jarosch, Inga; Behrends, Uta; Scheibenbogen, Carmen; Koczulla, Andreas Rembert

People with long COVID may suffer from a wide range of ongoing symptoms including fatigue, exertional dyspnea, reduced exercise performance, and others. In particular, impaired exercise performance is a condition that can be recovered in many people through an individualized physical exercise training program. However, clinical experience has shown that the presence of post-exertional malaise (PEM) is a significant barrier to physical exercise training in people with long COVID. Currently, there is no guideline or consensus available on how to apply exercise training in this cohort.

Therefore, we conducted a literature review in the PubMed library using the following search terms: “COVID”, “post-COVID”, “long COVID” and “exercise” searching for studies from January 2020 to January 2024. Data from 46 trials were included. Exercise training regimes were very heterogeneous and none of these studies reported on the management of PEM in the context of an exercise training program. Based on the feedback from an additional survey that was answered by 14 international experts in the field of exercise training in long COVID, combined with the authors´ own extensive practical experience, a best practice proposal for exercise training recommendations has been developed.

This proposal differentiates exercise procedures according to the presence of no, mild/moderate or severe PEM in people with long COVID. These recommendations may guide allied healthcare professionals worldwide in initiating and adjusting exercise training programs for people with long COVID, stratified according to the presence and severity of PEM.

Link | PDF (Sports Medicine - Open) [Open Access]

 

we only have one idea lets make it fit for everything . the fact that it has been shown to make significant numbers of patients worse of seems to completely escape these so called experts

 

This largely just looks like a compromise when you have people like Koczulla on board.

I do think it might be important enough to emphasise that physical activity is generally good if you don't experience PEM, which is essentially what every human being knows. Especially as there seems to be a lot of confusion about PEM in the LC field where either PEM is ignored or anything arbitrary is classified as PEM.

I think some emphasis on the fact that exercise is not curative for many non-PEM LC consequences (neurocognitive disability, anosmia etc) would be even more important (but maybe that's more specific to me because I absolutely love being physically active so I don't need to be motivated be physically active).

 

"Our recommendation for pacing (energy envelope maintenance) in severe PEM is based on a recent UK study showing that a structured pacing protocol significantly reduced the incidence of PEM and improved the general condition of patients with long COVID [68]."

Except that it likely wasn't pacing that was investigated in that study, plus that study's trial design didn't allow any conclusions on beneficial effects -- see:

[68] = https://www.s4me.info/threads/effec...-longitudinal-cohort-2022-parker-et-al.30753/

The whole paper shows a disregard to the thorough critique pwME and allies have published and keep publishing on the trial designs applied in that and I think most other studies included in the review.

Very disappointing to me that Scheibenbogen and Behrend gave their name to that piece

Also I'm afraid gives a clue to the quality of the studies on rehab they are doing together with the other authors of the paper.

And not good that the authors affiliated with private rehabilitation clinics/ business didn't acknowledge their COI.

 

What on earth is Scheibenbogen doing on this?

Why? I completely disagree. The evidence is that exercise prolongs healthy life in a steady state situation by reducing risk factors. That has nothing whatever to do with any benefit for people who are ill. You do not exercise people who have other illnesses. This is completely illogical and bogus thinking.

The fact that we feel ill when we are ill and that stops us doing exercise strongly suggests that it is a protective mechanism and that exercise is actually counterproductive during periods of illness. Why else did we evolve to feel ill?

 

Because LC is heterogeneous and some of those people affected might be living in a steady state situation+one symptom not related to exercise. I don't think one needs a study to simply state, "exercise to reduce risk factors present in everyone" but it's repeatedly happening nonetheless.

Really? It seems to me that exercise is usually proposed by clinicans as a universal to any medical medical problem independent of any evidence.

Because not everyone with LC feels ill. Some simply have something like anosmia. I don't know why one needs an exercise recommondation for someone with something like anosmia, but I suppose for some lung related problems it could be relevant. I don't think this paper really helps anybody, because anybody that feels fit will just be physically active, but who knows.

Independently of what any guidelines say people with pwLC and pwME that do have PE, are currently forced to undergo exercise "rehabilitation" programs in Germany. Maybe Scheibenbogen hopes that studies such as these are a compromise to end that by differentiating people with PEM from those without.

 

Apologies not able to read others' posts ATM just thought I'll post the direct link to the recommendations graphic to facilitate discussion

https://media.springernature.com/fu...aObjects/40798_2024_695_Fig2_HTML.png?as=webp

 

Apart from what I posted above -- that the whole approach / review/ referencing seems flawed to me -- , from that graphic it's not clear to me whether the recommendations refer to currently having PEM or generally experiencing PEM / known PEM from certain triggers? I guess the latter is meant but easy to misunderstand.

Also, even if people with LC experience severe PEM (so most likely people with ME/CFS) it is suggested they organize their support merely privately (only family, friends, colleagues, self-care groups are mentioned). Not helpful.

 

That graphic is a perfect example of the kind of thing that is written to make healthcare professionals feel better, not patients.

 

But that is the point surely. No evidence.

 

Well, if they just have anosmia presumably they can do as much exercise as they like anyway so there is no need to tell them to as management of 'LC'. And no, I don't think there is any evidence for exercise being beneficial for people with lung disease. Of course rehab units will push it as if there is a reason but basically if your lungs aren't too good, exercise isn't going to make any difference to them getting better. The whole industry is garbage.

 

Especially is has certainly never been validated in a non-ME/CFS-LC cohort to assess any kind of severity of anything.

 

I find it shocking. By definition, people who experience PEM are already exceeding their activity capacity at times.

The suggestion they should burn through any spare capacity doing structured exercise is absurd. Feck's sake, interval training? What's happened to basic common sense? That suggests the health and wellbeing benefits from activities they enjoy or earn income from, social interaction, nutrition and personal care, or spending time outdoors, would be much greater and less risky.

 

And because patients do by and large have basic common sense, when they get given these lists of complicated impossible exercises they say 'yes, doctor, of course I'll follow this' because they don't have the energy to argue or they don't want to be seen as 'difficult' or having the wrong attitude, then go home and try it a couple of times and crash, and never try it again. And if those patients are the lucky ones who spontaneously recover within six months or a year, the doctor will go on believing in happy ignorance that it was the exercise regime that did it, and go on prescribing it 'because my patients have found that it works'.

 

This paper appears rather confused, and its recommendations are unhelpful. While it emphasizes the importance of preventing PEM, it also seems to somewhat encourage exercise. Given that many people were already quite active, I personally would suggest the opposite, recommending exercise only if individuals are still clearly able to handle it and there is a clear benefit. However, is there such a benefit?

Regardless of severity, everyone should be pacing themselves. It's unclear why this wouldn't apply to people with mild to moderate severity. While certain individuals may be able to engage in careful exercises - and this should definitely be without graded activity - the focus should primarily be on those with very mild symptoms. People with moderate symptoms should definitely prioritize pacing over exercise.

The paper overlooks the fact that any overexertion can trigger a lasting relapse, and it's challenging to determine when or why this occurs. The side effects of "exercise as medicine" can be detrimental even when you think you're within the PEM triggering threshold. Additionally, we lack understanding of the long-term effects of exercise on disease trajectory with PEM. Are those who do not exercise, especially, more stable in the long term compared to those who continue exercising, even if they don't experience PEM? It's possible that individuals who persist in exercising may actually fare worse. Based on my own experience, I wouldn't be surprised if this were the case.

I'm disappointed to see both Scheibenbogen and Behrends as co-authors, but maybe without them paper would've been even worse?

 

People with severe PEM probably also have severe baseline symptoms. Suggesting that people who are bedridden with ME should "Plan regular and relaxing breaks throughout the day" seems rather insulting and totally clueless.

 

I think it's important to distinguish the exercise therapy from graded exercise therapy. GET aims to cure ME/CFS by gradually increasing exercise duration/intensity while exercise therapy simply tries to derive benefit from exercise. I don't know about other patients, but my bi-daily walk and people watching at coffee shops, even if it's only a few blocks with rest at every block, was a lifesaver when I was in the deep end of ME/CFS. It improved my mood so much that life was almost bearable.

That said, I'm not sure if an indoor exercise would bring similar benefit. It may prevent severe deconditioning, but it won't have any impact on the mood or sleep. At least it never did on me.