1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology, 2022, Cattadori et al

Discussion in 'Long Covid research' started by Andy, Apr 24, 2022.

  1. Andy

    Andy Committee Member

    Messages:
    21,956
    Location:
    Hampshire, UK
    Abstract

    The battle against COVID-19 has entered a new phase with Rehabilitation Centres being among the major players, because the medical outcome of COVID-19 patients does not end with the control of pulmonary inflammation marked by a negative virology test, as many patients continue to suffer from long-COVID-19 syndrome. Exercise training is known to be highly valuable in patients with cardiac or lung disease, and it exerts beneficial effects on the immune system and inflammation. We therefore reviewed past and recent papers about exercise training, considering the multifactorial features characterizing post-COVID-19 patients’ clinical conditions. Consequently, we conceived a proposal for a post-COVID-19 patient exercise protocol as a combination of multiple recommended exercise training regimens. Specifically, we built pre-evaluation and exercise training for post-COVID-19 patients taking advantage of the various programs of exercise already validated for diseases that may share pathophysiological and clinical characteristics with long-COVID-19.

    Open access, https://www.mdpi.com/2077-0383/11/8/2228/htm
     
  2. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,926
    Location:
    Aotearoa New Zealand
    As I think @rvallee said, it's like watching a train wreck in slow motion.

    A. Exercise is good and it's the approach we take to rehabilitate other conditions - therefore, long-Covid-19 patients should do exercise.
    B.We don't have any good experimental data, but, see A.
    There's a recommendation that a preliminary evaluation to be done, but there's nothing in the lists of tests about assessing for PEM. There's a passing mention of 'fatigue not alleviated by rest' being an exclusion criterion, but that is the only possible reference to PEM in the whole paper.

    It's not the idea that some people may benefit from exercise training after recovering from Covid-19 that's the problem here. It's that there is insufficient information and warnings given about post-Covid-19 ME/CFS.
     
  3. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,328
    But PEM isn't alleviated by rest. This is not describing the pathophysiology of PEM as it relates to M.E.

    Going back to ones baseline after exercise or from over exerting is dependent on how much they have gone over. It can take days, weeks, months or never going back to baseline depending on the individual patient.
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,508
    Location:
    London, UK
    But isn't it that as well?

    I am now three weeks from starting Covid-19 (second bout). I am probably 2 weeks from severe symptoms and a week from mild/moderate. There is no way that I would see any reason to undertake an exercise program. I have been doing odds and ends of things that I might normally have done but stopping whenever I think it might be wise judging by how I feel at the time (and also how bad I felt the time before I tired it). My impression is that the post-viral zonkness that I am still very aware of is not so very different from ME. If I do a lot I pay for it later. I am sure ME is something more (I do not have any sensitivity to stimuli although I did when the virus first hit) but the basic pattern is there.

    Why on earth would someone in my situation want to exercise?
    I am not a couch potato. The week before getting Covid I skied the Ventina run at Cervinia at maximum safe speed - 10-15 Km long non-stop and significantly ahead of some people thirty years younger. I enjoy exercise but I do not do it as a penance. There is absolutely no need to go out and do anything for a couple of months after a bout of illness like Covid. If people want to then let them see how they get on if they feel completely well.

    It's nuts.
     
    Last edited: Apr 24, 2022
  5. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,975
    I know you know, you saying this wasnt a surprise to me, and yet i still teared up with relief at seeing such sense spoken. I am particularly emotional today,but still, there sis something so comforting about being understood, of hearing sense in the midst of such a lot of insanity.
    when you 'pay for it', does it feel like you've gone back a week - like 'oh crap now i feel like a i did in wk 1' or similar?
     
  6. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,328
    What do mean by M.E is 'something more'. What you are describing in your case is post-infectious syndrome, not M.E. I had post-infectious syndromes for 5 1/2 years and it was not similar to M.E/PEM.
     
    hellytheelephant and alktipping like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    I don't think we can tell from another individual's brief statement that they are experiencing delayed post exertion symptoms whether their experience of post exertion symptoms is the same or different from other people's and whether it would fit the ME definition of PEM.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,464
    Location:
    Canada
    Imagine literally not talking with or reading from or listening to a single person with LC. Because that's the only possible way to somehow be completely oblivious to how absurdly incompetent it is to propose the same thing that has failed from the start. They seem to take a completely naïve approach, "we believe this works in other conditions", essentially ignoring all context and reality, taking the square object and smashing it through the round hole.

    The inability to learn from experience, outside of the context of a structured class, is becoming a major issue in medicine. Too many are free to simply pursue whatever they feel like doing without ever checking or vetting anything, and since most fail to learn from direct experience, most are literally learning wrong. This is horrible, it's essentially the same as teaching people wrong on purpose.

    The exercise programs are reviled in the LC community. Anyone who works anywhere near anything LC-related can easily know this. Maybe they do, and simply dismiss it as usual, simply believe in themselves and aren't bothered that reality contradicts their model.

    And the big idea here, since exercise programs have been there from the start, they literally pre-dated LC, is to do it the right way, I guess. Because even though this is what was already around and countless long haulers went through those programs, it's somehow a new idea, or at least it should be done differently, even though it was already established for years. Amazing, straight up amnesia-based medicine, where the past only counts where it's convenient, and never existed otherwise.

    There is simply nothing comparable in any other profession, it's impossible to be this inept at any other job and get away with it. Unless it's your own money, of course. Then whatever.
    From reading LC forums, what you mostly see is that lots of people exercise regularly and it's those who just jump back into their normal routine, sometimes advised by a GP, who simply assume the same, that since exercise is good for health, and they aren't sick anymore, they don't think twice about it. Especially anyone who is disciplined enough to exercise regularly, they're used to pushing through when it's hard, so they go right ahead and usually hit the wall immediately. Along with about half who think that it's probably a good idea to get in good shape, although now at least they are warned against it. "Do not exercise" is basically the #1 advice out there.

    That's what's most frustrating: the vast majority of patients will have tried that, either deliberately or simply following their normal routine. But the people running those programs don't care to ask anything of their patients, they mindlessly go through the motions.
     
  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    I find irony in the fact that while the BPS lot generally are all writing endless papers on exercise as a cure-all there is another faction of this group doing research into life stress causing neurological disorders (other threads). The irony being that exercise is one life stressor making illness worse.

    I say this in pretty much every post of this kind because it bears repeating. This 'treatment' has nothing to do with medicine. Nothing at all. The BPS idea has morphed from a reasonable -- consider the whole person ie view them in context. If english isn't their first language don't consider them stupid if they don't speak fluently, understand cultural variance, consider the setting in which you find people and a whole lot of other things. They do not rate as treating or curing illness but impact quality of life and a medics understanding of how to proceed.

    The reality of BSP NOW is a moral high ground of wanting everyone to conform to some normative pattern set by 'medical' ideologues for political ends. None of them would succumb to so-called 'functional' disorders in a way that others do. More recently some BPS research has tried including a biological element to their research although they will always stop short of including research into how to mitigate any social 'stressor' that might actually have an impact on quality of life (even though QofL is sometimes their only measure of positive impact). Because as per their moral high ground all stressors are psychological and within the person's ability to change.

    Simon Wessely was quoted on some other thread here recently that it's not about will-power and sometimes exercise is counter productive (or words something like that). Clearly they have been taking on board what is very much reasonable criticism of this need to see exercise as a magic healing crystal for everyone all the time.

    And I'd point out what I'm saying here is backed up not by my own opinion but by a body of BPS research and many many articles, tweets, communications across the years by the BPS.

    They might disagree that it amounts to a 'moral high ground' but that is the only reasonable way to interpret all of it when you are outside the bubble of this delusion. It has no scientific merit. And has aspects of cult like religious belief.

    Over the years they have evolved a more complex language and set of concepts to obfuscate the lack of any rigour. Sometimes the results have been even a somewhat hilarious word salad devoid of any real meaning.

    One presumes that the people who keep funding this worse than useless assault on sick people have the same sense of superior moral fibre as their researchers.

    Also, this new concept of BPS isn't new but goes back before the original idea. It goes way back through written history.

    If I had to psychologise it I'd say that people with a lot to loose in life fear the idea of chronic illness. Why that causes them to gravitate to 'fixing' it can be speculated I guess. Getting sick is not a problem so long as you either get well or die. Since there is no real treatment for a group of long-term illnesses the solution is to psychologise it away. But that is an opinion and not a fact.

    And when the current illnesses are properly understood through science there will be new illnesses to replace them no doubt and the same garbage will go on from the same quarters.

    It seems mystical nonsense like water always seeks the lowest point.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,508
    Location:
    London, UK
    more or less
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,508
    Location:
    London, UK
    Well I've been listening to you guys with ME for 8 years now and what I have had seems to have the same basic pattern. It is also reminiscent of what I had 50 years ago 6 months after EBV.

    As I indicated I don't think I have ME, but equally I do not have cardiac or lung disease. There is a delay in the pay back.
     
  12. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,255
    I'm not sure. Maybe they're just naive and are being misled by the BPS spin.


    It's strange how the BPS research gets funded so easily with so little quality control.
     
    oldtimer and JemPD like this.
  13. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    3,975
    well then its possible i have a 20yr long 'post infectious syndrome', because what Jonathan describes is how it is for me. Its like having had a bad bout of flu, getting to wk 2/3 and feeling improved, but if i do anything, any mental or physical exertion, then, after a delay, i pay for it & it's like going back to week 1 with full on flu again. Other symptoms developed on top of that - the 'something more' JE refers to - but i agree its the 'basic pattern'.

    Its so hard, i think we can all agree that PEM is a lot more than 'post exertional fatigue', but beyond that it seems for many of us our experiences have a wide variation.

    yes, I would agree for sure about the basic pattern.
     
  14. Trish

    Trish Moderator Staff Member

    Messages:
    52,324
    Location:
    UK
    I think for many of us the only way we could say we had ME rather than PVFS was that it lasted longer than 6 months. I hope that doesn't happen for you. At least you know not to exercise.
     
  15. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    565
    Interesting comment. Often, I've seen a post-infectious illness suggested as a diagnosis when the duration is less than 6 months. Could you expand on what was different between the post-infectious syndromes you had for 5 1/2 years and ME?
     
    alktipping and oldtimer like this.
  16. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,926
    Location:
    Aotearoa New Zealand
    You are probably right.

    I guess I was thinking of the entire range of people with some lasting effects from Covid-19. Some of these people won't have ME/CFS and may indeed have become deconditioned as a result of being in hospital. Some people might want help to regain their fitness. Or, they might have lung damage, and maybe some of the protocols for dealing with that such as the coughing exercise that is included in the suggested regime help with that. I don't know, it's not my area of expertise and I haven't looked at the evidence. So, I was thinking that I can't completely dismiss the idea of an exercise plan potentially being useful for some people after Covid-19.

    But, I do know that anyone offering exercise protocols to people who have had Covid-19 absolutely should be saying - listen to your body. If a level of activity makes you feel worse, (and watch out for delayed payback), do less.
     
    Trish and alktipping like this.
  17. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,328
    I recovered from the initial virus and my health started improving (80-90%) slowly over the first 5-6 years. The main difference is that I didn't experience PEM or OI during those years.
     
    Medfeb and alktipping like this.
  18. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,926
    Location:
    Aotearoa New Zealand
    I don't understand your comment.

    The paper says that 'fatigue not alleviated by rest' is an exclusionary condition for their exercise protocol. So, they are essentially saying, 'if you have fatigue that doesn't get better with rest, then you are not a candidate for the protocol'.

    Of course PEM is more than fatigue. But, as you say, PEM is not like simple tiredness that can be fixed by resting. So, in theory, someone with PEM should be excluded from the exercise protocol. (And, I think in some senses PEM and the fatigue of ME/CFS are alleviated by rest - not resting results in a worse outcome - so it gets very messy.)

    What I was saying is that that brief fine-print statement is not nearly enough warning. Most exercise therapists who don't already know about PEM will completely miss it.
     
    alktipping, It's M.E. Linda and Trish like this.
  19. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    565
    Thanks, @Mij. Did you have a known trigger to your relapse or did it just happen with no obvious cause?
     
    alktipping and It's M.E. Linda like this.
  20. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,328
    I had a relapse from taking Imunovir for 3 weeks that reactivated EBV and HHV6. I slowly improved years after that but never regained my baseline. I also developed OI and became more disabled from that.

    The immune modulator was prescribed to me by a virologist who did a small study with Dr. Byron Hyde on CFS patients. He told me it helped their 'fatigue' but it had a disastrous effect on me.

    The Virologist told me what I experienced was an 'immune response' similar to IRIS (immune reconstitution inflammatory syndrome).
    This occurs with HIV patients. It's a state of dysregulated, hyper-inflammatory response against opportunistic infections that usually occurs in the first six months of treatment for HIV/AIDS pts.
     
    Last edited: Apr 28, 2022
    alktipping, It's M.E. Linda and JemPD like this.

Share This Page