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Review nature reviews cardiology: Cardiovascular autonomic dysfunction in post-COVID-19 syndrome: a major health care burden, Fedorowski et al, 2024
- Thread starter Kalliope
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Kalliope
Senior Member (Voting Rights)
Response in nature by Ching-Chuan, Rhijn-Brouwer, Hellemons, Stingl, Hoffman, VanDerNagel, Davenport, Untersmayr, Scheibenbogen & Putrino
Graded exercise therapy should not be recommended for patients with post-exertional malaise
quote:
In their Review 1, the authors suggest graded exercise therapy for patients with post-exertional malaise based on the PACE trial, which reported positive effects of a combined intervention with graded exercise therapy and cognitive behavioural therapy in patients with ME/CFS. However, the results of this trial have been called into question owing to substantial protocol deviations and retrospective adjustment of the criteria used to define recovery.
Graded exercise therapy should not be recommended for patients with post-exertional malaise
quote:
In their Review 1, the authors suggest graded exercise therapy for patients with post-exertional malaise based on the PACE trial, which reported positive effects of a combined intervention with graded exercise therapy and cognitive behavioural therapy in patients with ME/CFS. However, the results of this trial have been called into question owing to substantial protocol deviations and retrospective adjustment of the criteria used to define recovery.
Kalliope
Senior Member (Voting Rights)
... to which the review authors replied:
quotes:
We did not advocate generic advice to ‘do exercise’, but were calling for a more nuanced, individualized and supervised approach to exercise in these patients, as recommended by the UK National Institute for Health and Care Excellence (NICE)3. In this spirit, we recommended a graded approach to exercise therapy.
...
The issue of post-exertional malaise after different types of exercise is intriguing and hitherto not extensively studied4,5. Patients with post-exertional malaise undoubtedly feel substantially worse immediately, and in the short-term, after exercise. However, clinical observations demonstrate that, over time, exercise can be beneficial in many patients with POTS6,7, including those with post-COVID-19 syndrome8. Although post-exertional malaise was not formally assessed in these studies, some patients are likely to have had post-exertional malaise. We, the authors of the Review, see many patients with POTS in our clinical practices, and each of us has seen patients who had initial worsening at the onset of an individual training programme, but who improved during follow-up under careful supervision by professional staff.
https://www.nature.com/articles/s41569-024-00994-3
Anyone else reminded of how the PACE results after the retrospective adjustment better fitted the researchers clinical practice experience?
Artur Fedorowksi has replied to the response "Graded exercise therapy should not be recommended for patients with post-exertional malaise". I think this makes his position very clear. Of course he has no problem contradicting himself here since if there's no verdict he shouldn't have recommended it in his paper...
www.twitter.com/ArturFedorowski/status/1751031484440293858
www.twitter.com/ArturFedorowski/status/1751031484440293858
mango
Senior Member (Voting Rights)
I'm deeply disappointed and disheartened
This is definitely affecting my confidence in his compentence as a doctor/researcher negatively.This is a completely new side to him that I've never seen or heard about before. My friends (severely ill pwME) who have been his patients, and others who have shared their experiences of him as a doctor on social media over the years, have all had very good things to say both about his knowledge and the help they were offered, as well as his respectful, caring nature. None of them have been recommended GET or any kind of exercise/gradually increased activity, as far as I know.
I've already been severely and permanently harmed way too many times by doctors and other people in power (the social insurance agency, the social services at the municipality, dentists, and so on) who keep on deliberately ignoring the risks, all different kinds of risks, not just GET. So many of my friends have been permanently harmed too.
It's a completely unacceptable behaviour/attitude, to not prioritize patient safety.
Fedorowski has actually been at the top of my wish-list of doctors to see for a long time, if only through a video call. I was working on a self-referral, in collaboration with my GP, when KS (the clinic Fedorowski is working at) temporarily stopped accepting referrals some weeks ago because of their currently very long waitlist. So this feels deeply personal to me.
This is clearly a potential dealbreaker for me. Why would you choose to trust a doctor who doesn't value patient safety?
Jonathan Edwards
Senior Member (Voting Rights)
The bottom line is whether you trust a doctor who does not base their practice on reliable evidence.
The review article isn't framed in terms of reliable evidence anyway. What I find disappointing is that people like Topol and Stingl seem to buy into it. Whether or not a story suits your taste is irrelevant. It needs evidence.
So I am not too surprised by the stuff about exercise to be honest.
We see lots of patients... they improve under supervision of professional staff...
Where have we heard that before?
The review article isn't framed in terms of reliable evidence anyway. What I find disappointing is that people like Topol and Stingl seem to buy into it. Whether or not a story suits your taste is irrelevant. It needs evidence.
So I am not too surprised by the stuff about exercise to be honest.
We see lots of patients... they improve under supervision of professional staff...
Where have we heard that before?
Mij
Senior Member (Voting Rights)
The paper he is referencing doesn't address DELAYED PEM. I feel quite good immediately after exercise and for the next several hours. He doesn't understand M.E.
Artur Fedorowski won't allow replies on his X account anymore.
"The issue of post-exertional malaise after different types of exercise is intriguing and hitherto not extensively studied4,5. Patients with post-exertional malaise undoubtedly feel substantially worse immediately, and in the short-term, after exercise".
Sid
Senior Member (Voting Rights)
Every quack says the same thing about his quack therapies.
mango
Senior Member (Voting Rights)
@MittEremltage comments on Fedorowski et al's reply and apology, in her latest blog. Thank you! 
En förklaring och en ursäkt
https://mitteremitage.wordpress.com/2024/01/27/en-forklaring-och-en-ursakt/
En förklaring och en ursäkt
https://mitteremitage.wordpress.com/2024/01/27/en-forklaring-och-en-ursakt/
Auto-translate said:
mango
Senior Member (Voting Rights)
Twitter thread by Todd Davenport, commenting on "the jury is still out":
"✌The jury is still out✌ seems like a deeply unserious response to a deeply serious issue when there’s more than enough evidence already for a jury to have decided and gone home to rest easy with their choice.
It’s all here. No wonder the good prof still has me blocked."
"Graded exercise has been studied for years in POTS, and the people who treat it with exercise rely on a largely flimsy literature to suggesting efficacy, including in this case, direct evidence from *checks reference section again* an unpublished abstract for people with PASC."
"Yet, as the authors point out, “clinical observations” and results of patient surveys suggest worsening in symptoms and functional status is common, maybe even expected, in response to prescribing aerobic exercise in people with POTS. And they don’t always get better over time."
"Don’t believe me? All good. Look at dropout rates in the few existing studies of exercise for POTS. I bet they tell an interesting albeit indirect story by themselves. Patients always seem to know something we clinicians and researchers don’t. Survivorship bias is a helluva drug."
"Now, about PEM. I venture every person living with PEM has a form of dysautonomia, either from chronotropic incompetence or orthostatic intolerance or both. In a subset of people with PEM, the orthostatic intolerance by itself is severe enough to meet clinical criteria for POTS."
"We know this from modalities like tilt tables and cardiopulmonary exercise testing. There’s enough of an evidence base to have systematic reviews on the effects of acute exercise and position changes on PEM, which are worsened in a graded manner based on functional disablement."
"We know the effects are prolonged, and with exercise, occur at submaximal levels of exertion that aren’t faked and different at submaximal levels of exertion in a way that’s different than people who are out of shape. Levels of exertion *we use to prescribe aerobic exercise.* "
"We know PEM isn’t deconditioning because we have compared the post exertional state in people with PEM
who we have shown to very likely have some type of dysautonomia) directly with people who don’t exercise and so therefore who are out of shape.
Importantly very different."
"If the acute response to aerobic exercise is abnormal, how would we expect the body to just magically begin to respond if we overload it? Simple. Based on the best available evidence we don’t. By extension maybe that’s why many people with POTS suggest exercise is unhelpful."
"In an abundance of fairness, we haven’t looked into every form of movement and exercise prescription in POTS and there is a subgroup of patients who seem to feel better with exercise. This is where we “circle back” (ugh so corporate ) to the precautionary principle: do no harm."
"If you know there are people with some kind of thing that’s worsened with exercise, and that number is potentially a lot, and that you can apply some easy clinical reasoning to avoid harms—why not just do that? Why not stop at a full throated endorsement of avoiding maleficence?"
"Well, I’ll tell you. PEM is the unreconciled “original sin” of POTS management. It was prior to PASC, and it continues to be now.
So while the “jury” has had plenty of evidence to decide, and they communicate their decision every day with their preferences and actions…"
"…they’re just waiting for us clinicians and researchers to catch up.
Because, you see, the “jury” isn’t us clinicians and researchers.
It’s the people we purport to serve."
"Anyway. Publish it in a Nature vertical or put it up on Twitter, it’s all the same to me."
"Nature won’t let you use emojis, so there’s that. 
"
"✌The jury is still out✌ seems like a deeply unserious response to a deeply serious issue when there’s more than enough evidence already for a jury to have decided and gone home to rest easy with their choice.
It’s all here. No wonder the good prof still has me blocked."
"Graded exercise has been studied for years in POTS, and the people who treat it with exercise rely on a largely flimsy literature to suggesting efficacy, including in this case, direct evidence from *checks reference section again* an unpublished abstract for people with PASC."
"Yet, as the authors point out, “clinical observations” and results of patient surveys suggest worsening in symptoms and functional status is common, maybe even expected, in response to prescribing aerobic exercise in people with POTS. And they don’t always get better over time."
"Don’t believe me? All good. Look at dropout rates in the few existing studies of exercise for POTS. I bet they tell an interesting albeit indirect story by themselves. Patients always seem to know something we clinicians and researchers don’t. Survivorship bias is a helluva drug."
"Now, about PEM. I venture every person living with PEM has a form of dysautonomia, either from chronotropic incompetence or orthostatic intolerance or both. In a subset of people with PEM, the orthostatic intolerance by itself is severe enough to meet clinical criteria for POTS."
"We know this from modalities like tilt tables and cardiopulmonary exercise testing. There’s enough of an evidence base to have systematic reviews on the effects of acute exercise and position changes on PEM, which are worsened in a graded manner based on functional disablement."
"We know the effects are prolonged, and with exercise, occur at submaximal levels of exertion that aren’t faked and different at submaximal levels of exertion in a way that’s different than people who are out of shape. Levels of exertion *we use to prescribe aerobic exercise.* "
"We know PEM isn’t deconditioning because we have compared the post exertional state in people with PEM
who we have shown to very likely have some type of dysautonomia) directly with people who don’t exercise and so therefore who are out of shape.Importantly very different."
"If the acute response to aerobic exercise is abnormal, how would we expect the body to just magically begin to respond if we overload it? Simple. Based on the best available evidence we don’t. By extension maybe that’s why many people with POTS suggest exercise is unhelpful."
"In an abundance of fairness, we haven’t looked into every form of movement and exercise prescription in POTS and there is a subgroup of patients who seem to feel better with exercise. This is where we “circle back” (ugh so corporate ) to the precautionary principle: do no harm."
"If you know there are people with some kind of thing that’s worsened with exercise, and that number is potentially a lot, and that you can apply some easy clinical reasoning to avoid harms—why not just do that? Why not stop at a full throated endorsement of avoiding maleficence?"
"Well, I’ll tell you. PEM is the unreconciled “original sin” of POTS management. It was prior to PASC, and it continues to be now.
So while the “jury” has had plenty of evidence to decide, and they communicate their decision every day with their preferences and actions…"
"…they’re just waiting for us clinicians and researchers to catch up.
Because, you see, the “jury” isn’t us clinicians and researchers.
It’s the people we purport to serve."
"Anyway. Publish it in a Nature vertical or put it up on Twitter, it’s all the same to me."
"Nature won’t let you use emojis, so there’s that.
"Yea, lets request parity - would you license a drug on that basis - hearsay? If not, then why is it acceptable for a non-pharmaceutical intervention - especially when objective indicators can be incorporated into trials [of a non-pharmaceutical intervention] i.e. to test for long term (real world) effect?
Stingl is one of the co-authors of the letter of concern. Did he say something different elsewhere?
Jonathan Edwards
Senior Member (Voting Rights)
He opens his tweet (above, quoted by Kalliope) with:
"A good overview of the diagnosis and treatment of cardiovascular dysautonomia, e.g. POTS, in the context of Long Covid."
Judging by the abstract it is as much an overview of dodgy science and eminence-based therapy as the BPS stuff.
We need the ME/LongCovid science community to start doing things properly. Just because one lot talk sort-of-physiology rather than psychology does not make them any more value to patients.
The value to patients is to not be psychologized. Preferably without being pushed into other unevidensed (quack) treatments although it sometimes seem to venture into that.
Andy
Retired committee member
Trial By Error: Debate Over Recent Citation of Arguably Fraudulent PACE Trial
Professor Fedorovski et al conclude their response with this: “The jury is still out; we should wait for the verdict and respect it when it comes.” No, the jury is not “still out” when it comes to the PACE trial. That’s bullshit. If these experts want to promote an individualized approach to exercise for some Long Covid patients, that’s one thing. But it is not appropriate for them to mis-cite the findings of the PACE study and the NICE guidelines to justify their position and then suggest that others have misinterpreted their intention. In this context, their “apology” about “lack of clarity” is essentially meaningless.
https://virology.ws/2024/01/27/tria...t-citation-of-arguably-fraudulent-pace-trial/
Professor Fedorovski et al conclude their response with this: “The jury is still out; we should wait for the verdict and respect it when it comes.” No, the jury is not “still out” when it comes to the PACE trial. That’s bullshit. If these experts want to promote an individualized approach to exercise for some Long Covid patients, that’s one thing. But it is not appropriate for them to mis-cite the findings of the PACE study and the NICE guidelines to justify their position and then suggest that others have misinterpreted their intention. In this context, their “apology” about “lack of clarity” is essentially meaningless.
https://virology.ws/2024/01/27/tria...t-citation-of-arguably-fraudulent-pace-trial/
Precisely and thanks.
Genetic studies like:
- DecodeME (GWAS) - which you (Jonathan) identified as a potential way to make progress; and
- studies to find rare genetic variants via family studies (e.g. with multiple members affected). Hopefully NIH will fund this - see webinar;
Two things of particular note
1. Federovski hasn't understood PEM
2. He hasn't read the NICE guidelines properly.
He says:
That is not what NICE says. It allows for supervised exercise programs for those who want them, but not graded. NICE specifies that any exercise program must still keep people below their PEM threshold.
https://www.nice.org.uk/guidance/ng206
I disagree with that part of the NICE guideline. There's no evidence any exercise program enables pwME to improve their physical abilities, but at least it advises staying within current limits.
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