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JOSPT: Humility and Acceptance: Working Within Our Limits With Long COVID and ME/CFS - Décary et al - 2021

Discussion in 'BioMedical ME/CFS Research' started by Kalliope, May 1, 2021.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Journal of Orthopaedic & Sports Physical Therapy
    Editorial
    Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    Simon Décary, PT, PhD et al

    Abstract

    Synopsis
    The term long COVID was coined by patients to describe the long-term consequences of COVID-19. One year into the pandemic, it was clear that all patients—those hospitalized with COVID-19 and those who lived with the disease in the community—were at risk of developing debilitating sequelae that would impact their quality of life. Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight postviral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly similar to those of myalgic encephalomyelitis (ME). Community-based physical therapists, including those in private practice, unaware of safety issues, are preparing to help an influx of patients with long COVID. In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.
     
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  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Seems only the Abstract synopsis is available. Can't find it on Sci-Hub yet.
     
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  3. Milo

    Milo Senior Member (Voting Rights)

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    3 authors are Canadian patient partners including @ScottTriGuy, Sabrina Poirier and Christiane Garcia. Congratulations to all!
     
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It seems to recognise that there is a problem but why issue safety recommendation for rehabilitation rather than say we have no reason at present to recommend any sort of rehabilitation. Maybe physiotherapists have nothing to offer people with this sort of post-viral illness - period. In very severe cases physios may have a role in preventing tendon contractures in immobile people but is that really 'rehabilitation' or is it ongoing care of someone who is seriously ill?
     
  6. Hutan

    Hutan Moderator Staff Member

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    Authors also include Darren Brown and Michelle Bull. @PhysiosforME
    Yes, I agree with you. But, people will turn up at the exercise therapist's door, and if the exercise therapist knows to say what is on that little diagram (stop pushing through, rest, pace) and can explain the concept of post-exertional malaise, then that is helpful. Many of the people turning up will in fact be recovering, and while I don't think most will need any help to do so, some may want help as they get back to their previous activity level.

    When I became ill, I signed up for individual pilates thinking I just needed to get fit, and I and the instructors both became a bit demoralised and frustrated at my lack of progress, in fact, my deterioration. I wish they had known what this editorial appears to be promoting.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree but we need to get away from the culture that assumes that therapist-delivered treatments can just be assumed to be useful - somehow or other as long as you are careful. Therapists, just like doctors, need to learn to say that they do not think that there is help to be given in that way.

    The right advice is very very simple. Rehabilitation is not indicated for Covid-19. At least not until someone shows some form of 'rehab' is useful. Humility and acceptance needs to include honesty.

    This is the whole battle that has been going on with NICE and Cochrane. We need some honesty.
     
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  8. Hutan

    Hutan Moderator Staff Member

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    I guess the issue is 'useful for what'? Clearly, such treatments are useless for curing or even improving ME/CFS.

    But, say you are an elite athlete, and you've just had 6 months mostly lying in bed following Covid-19, with ME/CFS symptoms. Now, you are feeling better and want to start getting back into training. You almost certainly will receive some assistance from a physical trainer and a physiotherapist. It's going to be a lot better if those professionals understand post-infection illness, and help you take a cautious approach that carefully monitors for PEM. We want them to know that exercise will only be useful in regaining your previous performance level if you have, in fact, recovered from the illness.
     
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe but what has that got to do with 'safety recommendations for rehabilitation'.
    If athletes want to train that is not rehabilitation. It is training to do sport.
    And even there, how does any physio or trainer know how to advise beyond the simple message you have just put down. And in fact nobody understands post-infectious illness. For therapists or trainers to pretend they do is exactly what we do not want. People pretending they know is the basic problem.

    I think the message needs to be much simpler and clearer. Otherwise we have therapists being the rules and carrying on pretending they know what they are doing. We don't have evidence so how can they?
     
  10. Graham

    Graham Senior Member (Voting Rights)

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    I must admit that after a year of various hospital stays, my physical strength has dropped markedly. This makes me remember a man who completed a Chalder Fatigue questionnaire for me (along with over a hundred others) a number of years ago when I was trying to get to grips with how patients interpreted the instructions.

    He was one of a small number of people who had marked at least one of the items on the list as scoring zero, that is better than when they were ill. I went back to each of these and checked that that was what they meant, and of course in most cases it wasn't: they were just scoring the severity on a zero to three scale.

    But in his case he had been quite an athletic sort, and missed that level of activity. So instead he had taken up isometric strength training, and was now physically stronger than he had been.
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    At the very least many pwME&LC will be referred to physios, so if at least it can prevent those referrals from causing harm it's definitely a good thing. I frankly don't see much usefulness for any of the Ts, whether it's physio or occupational. But for sure not everyone adapts easily and a small % may benefit indirectly, though nothing better than any patient community will share.

    However there is a clear obsession that this must be the answer, new programs are still opening up. It's all hustle, no one seems to be learning from it, all they do is do the thing they're familiar with. This message will reach few but that's probably the best we can hope for.
     
  12. Grigor

    Grigor Senior Member (Voting Rights)

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    Sci-hub doesn't work since 2021. Only from before.
     
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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I didn't know that, thanks @Grigor
    What a pity..
     
  14. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    I suppose this depends on the definition of rehabilitation - I see it very much about optimising function holistically which may differ from how others define it.

    As physios for ME we took part in an education day to try and highlight this. https://www.physiosforme.com/post/physios-for-me-present-when-exercise-isn-t-indicated-but-rehab-is We are seeing people making progress to restore function using some of the approaches we describe and we are continually learning and developing this knowledge which can only be a good thing

    I know that I have used my physio skills and expertise to support people with ME in many ways - there is more to physio than exercise. One of the best examples we have is a physio providing advice for postural support in lying that made a huge difference to the person with ME - which I agree may be more about appropriate ongoing care rather than specific rehab.

    BUT a lot of our colleagues will go to exercise first and we have been trying to spread the message about the risks and potential harm from this approach and how 'rehab' may need to look very different to usual approaches.
     
  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thank you again for all you are doing to help people with ME and Long Covid and to educate other professionals.
     
  16. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

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  17. Trish

    Trish Moderator Staff Member

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    Thanks @PhysiosforME. I am grateful that you are managing to have some input into the Long Covid and ME/CFS approach to 'rehabilitation'. It's so important to get physios and other therapists and clinicians to recognise that the standard 'go to' method of rehabilitation based on increasing exercise is harmful for those with PEM.

    I wonder whether the use of the term 'rehabilitation' is itself causing harm in people with PEM, since it conveys the suggestion - to patients, clinicians, families and employers - that there is something active that can be done that will lead to improvement and recovery. The word itself is problematic.

    As far as we know, there is no 'treatment' that affects whether a post viral case that includes PEM will become long term chronic, ie ME/CFS, or whether there will be a gradual improvement and recovery. It seems to be about trying to avoid worsening by getting plenty of rest and pacing while waiting to let nature decide. It therefore makes more sense to me not to describe the process as rehabilitation but as convalescence.

    I agree that physios have a role in helping those severely affected in things like mobilising to prevent contractures and bed sores, ensuring appopriate bedding and wheelchairs etc and helping with what limited activity is possible.

    And I agree that there is a role for professionals educating patients about pacing to try to prevent PEM and worsening, and support with the practicalities of coping with changes in the person's life. I'm not sure whether that has to be done by a physio for someone who is not bedbound and does not have specific difficulties with mobilising other than the effects of fatiguability and PEM. On the other hand, if the message can be conveyed to rehab phsios, as you are doing, that exercise is not the way to go for everyone, that's got to be an important step forward.
     
  18. Barry

    Barry Senior Member (Voting Rights)

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    How do you access Sci-Hub these days? I seem to have lost the ability to connect to it.
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I realise that your intentions are good but the whole idea of having a scientific forum here is to try to pin down a decent evidence base. Trudie Chalder and her friends and osteopaths and homeopaths and naturopaths will say exactly the same thing - that people make progress using their approaches.

    As I pointed out at the NICE committee, if you look at the data from PACE it is pretty clear that it would be impossible for practitioners to be able to tell from routine practice which aspects of their care was beneficial and which was simply natural recovery. The picture is stark - any specific benefit looks tiny in comparison to what happens regardless.

    As health care professionals were all want to believe that we are helping but we need evidence of that. What trial methodology has taught us is that you simply cannot do it from just muddling along with routine practice getting an impression this or that works. I used to do that as a physician forty years ago but I learned not to.

    Gathering proper evidence for therapist-delivered treatments is very hard. As Keith Geraghty has pointed out we probably need completely new methods, distinct from standard trial format. But they are going to need to be more rigorous than for drugs rather than just 'clinical experience'. Lynne Turner-Stokes says that exercising should work for anything on the basis of clinical experience. In her position as Important Person she can just say that and be right - if we continue to muddle along without proper evidence.

    I personally do not see any reason to think that any sort of increase in activity is an appropriate treatment for either ME or Long Covid. Once people are able to do more then they can if they want. I am afraid I don't go much for vague ideas like 'holistic approaches'. I think we need to be quite precise what it is we are wanting to achieve.
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    I'm not able to read the full text, but for people new to ME/CFS-like problems then even pacing would be a concept they would likely need help with adapting to. Though I agree that is probably more like illness management than rehabilitation. But they would desperately need help, so long as it is the right kind of help.

    I also feel the word "rehabilitation" is ambiguous and interpretable in all sort of ways.
     
    Last edited: May 2, 2021

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