Trial Report Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition A Randomized Crossover Clinical Trial, 2024, Tryfonos et al

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?
 
Hutan said:
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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Well, they view all of them - GET, CBT and Activity Management, in their pre-2021 forms - as graded activity therapies. GET is the only one confined to physical activities only, but they do include things like gardening or sitting up in there, depending on people's level, as well as identifiable exercise. And they do often point out that the increases are in addition to what you're doing already, eg GETSET patient booklet:
This exercise or activity is in addition to your current daily activities as the aim is to strengthen your body.
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and Wallman 2005 https://pubmed.ncbi.nlm.nih.gov/16053417/:
Patients should also be informed that the exercise sessions are in addition to their normal activities
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But they don't measure whether this is happening or not. It's quite possible that this was the fatal flaw in not noticing what was going on.

Based on what's allowed in the back door of the 2021 NICE guidelines, I don't think they realised anything at all!
 
alex3619 said:
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?
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-during my cfs clinic “management” course I was working part time 3 days and in order to do the clinic sessions after trying to do the extra day on non working day I had to drop a work day in order to manage to keep attending.
 
rvallee said:
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.
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Yep this is just a long anecdote exampling how there are some who still don't/won't get that there is another definition of 'can't' .. which is that arrogance that has made us all very ill by people spreading misinformation about it ... which is that when we force ourselves we can indeed hurt ourselves and it will hit days later when conveniently the HCP (or layperson who was just being selfish or a bigot or enjoying being mean) can avoid witnessing it.

Obsessively trying to pretend 'but seeee... they just needed us idiots who think we can learn by not listening and not learning and not growing but just speaking our same misunderstanding at the disabled people as if they must be the stupid ones to simplify it all' is abuse in actual implementation.

I understand their mental health type state of denial and unwillingness to grow when it is something they don't fancy doing as a change in their job that's how post-hoc justification works, but forcing yourself onto people who you hurt because you insist 'if it hurt you last time it can't have been the thing I'm about to do, just gizza nother go' and then walking away still refusing to be accountable for that by then foreseeable and warned about harm you are about to impose onto something is amoral and wrong.

And no amount of weasel words and pretending something is different by pretending you don't understand a term or rewording its meaning should make these people less liable. It is a paper-based exercise in people who want the world to bend to what works best for them and hammering at individuals who they get angry at because in their mind they won't conform to their constructivist re-imagining of reality, but in truth are their victims of a subject that is jettisoning science in order to not be safety compliant for them.

It is hardly mind-bending or field-bending to have a condition or a drug/treatment where the harm comes later. And is cumulative. I quite simply don't get the arrogance-ignorance going on here.

If it was 'symptom dependent' then it wouldn't require an enforcer? Far too many afflicted by the condition were bigger athletes than they were prior to being ill! And the rest fit in a heck of a lot in their life. SO the idea they aren't tenacious enough to with basic advice when they first get it from people who do know what they are talking about ie science work things out a lot better than them is outrageous bigotry and stupidity.

What on earth do they think they are actually showing if they aren't following up people three years on and showing a very significant % recovery from where they were to almost normal? Other than a form of coercion on the vulnerable and how much you can make them bend the facts under duress/social pressure/being forced into 'wishful thinking' by threats of 'we'll accuse you of having a mental health problem unless you cave to toxic positivity and rephrase your level of disability' (and of course toxic positivity is actually anti-mental health and harmful too)?

Another reason why for these sectors they need to ban subjective assessments. And particular ban them being done by anyone not utterly independent, without physical function tests, and completely banned where any sort of communication coercion like the physio-CBT (pretend CBT which is more about making people say things differently and hasn't been designed on a model that works).
 
There's a follow-on paper, but given the problems with the cohort as outlined in this thread I'm not sure it's worth posting separately. I'll record it here.

Non-Hospitalized Patients With Post-COVID Condition and Myopathic Electromyography Findings Show no Difference in Symptom Severity and Clinical Manifestations Compared to Those Without Myopathic Findings (2024)
Atif Sepic; Andrea Tryfonos; Helene Rundqvist; Tommy R. Lundberg; Thomas Gustafsson; Kaveh Pourhamidi

INTRODUCTION
The COVID-19 pandemic has resulted in a post-infectious syndrome designated as long-COVID or post-COVID condition (PCC) that presents with numerous symptoms including fatigue and myalgias. This study evaluated myopathic electromyography (EMG) findings in non-hospitalized PCC patients in relation to symptom severity, quality of life (QoL), and physical function.

METHODS
Twenty-nine PCC patients with persistent symptoms ≥ 3 months after laboratory-confirmed SARS-CoV-2 infection, without hospitalization or comorbidities, were included. EMG, nerve conduction studies (NCS), and quantitative sensory testing (QST) were performed. Symptom severity was measured with visual analog scales, QoL with validated questionnaires, and physical function with the 6-min walk test, cardiopulmonary exercise testing, handgrip strength, and isokinetic dynamometry.

RESULTS
Myopathic findings on EMG were present in 62% of PCC patients (n = 18). Symptom severity (muscle pain and fatigue) and QoL (physical function and fatigue) were similar between patients with and without myopathic EMG findings. The 6-min walk test (457 ± 81 vs. 459 ± 86 m) and peak VO2 (29 ± 9 vs. 28 ± 6 mL/kg/min) were similar between patients with and without myopathic EMG findings. Handgrip strength (32 [29–43] vs. 33 [29–50] kg) and quadriceps muscle strength (136 [111–191] vs. 136 [114–184] Nm) were comparable between the groups. NCS and QST results were normal in all patients.

DISCUSSION
Myopathic findings on EMG are common in PCC patients, but no significant differences in symptom severity, QoL, or physical function were found between those with and without myopathic EMG findings. Myopathic EMG changes in PCC patients should be interpreted with caution, considering the overall clinical context.

Link | PDF (Muscle & Nerve) [Open Access]
 
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