More than “Brain Fog”: Cognitive Dysfunction and the Role of Occupational Therapy in Long COVID, 2025, Skiffington and Breen

Discussion in 'Long Covid research' started by Sly Saint, Dec 31, 2024.

  1. Sean

    Sean Moderator Staff Member

    Messages:
    8,323
    Location:
    Australia
    THIS!

    It is infantilising, intrusive, and insulting.
     
    Ash, alktipping, LJord and 6 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,589
    Location:
    London, UK
    Of course, yes, but the author is clearly under the impression that 'orthostatic intolerance' is some physiological mechanism that explains something. This sort of pseudo explaining is at the very heart of the problem we have with BACME. Talking down to people from a position of complete ignorance.
     
    Ash, alktipping, shak8 and 6 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Messages:
    30,105
    Location:
    Aotearoa New Zealand
    I have finally read the paper and I want to have one more go at defending the authors.

    There is good intent here and also a lot of good content. I think it is a helpful document.

    I know @Sean that you weren't saying this paper is infantilising and insulting, but instead that micromanagement is. I agree that we don't need micromanagement of our lives, but I really don't get a sense that these authors are suggesting that we do. Members here will know that I regularly feel insulted by patronising attitudes to people with ME/CFS, but I didn't feel that with this paper. I think the authors have accumulated some useful knowledge and want their colleagues to have it too, so that it can be shared with people adjusting to their new limitations.

    Yes, there is the odd slip up, things like assuming that neuroinflammation definitively is the cause of the cognitive difficulty, but in most of the document the authors are good at noting that ideas such as viral persistence and microvascular issues are unproven hypotheses. Could the paper have been better if it didn't discuss possible causes of symptoms so much? Yes, absolutely. I get frustrated about the unevidenced nonsense in published papers as much as anyone here. Could the document have been better if we here at the forum had had a chance to critique a draft? Yes.

    But writing about ME/CFS and Long Covid is an utter minefield, not helped by all the misinformation being spouted by people who give the impression they are reliable authorities. Frankly, I have seen worse materials coming from patient charities. The UK CPD course that was produced, associated with Doctors for ME, to educate medical professionals was much worse. The 2021 NICE Guidelines probably had more about micromanagement with its focus on management plans than this paper does and, just as that imperfect guideline has the potential to improve the lives of people with ME/CFS, so too does this paper.

    I don't want these authors coming here, reading the comments and thinking that their work has not been appreciated. I appreciate it and I think they have mostly done a good job, and that there is some great content that I want occupational therapists to see. I am grateful that they cared enough to spend the time putting this resource together.
     
    Last edited: Jan 2, 2025 at 11:18 PM
    bobbler, Ash, Amw66 and 16 others like this.
  4. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    1,312
    Their electric systems are different to most systems in the west lower voltages .
     
    Ash, Nightsong, Trish and 2 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    13,946
    Location:
    Canada
    It does look far better informed than average. However:
    I have not seen any evidence that this rehabilitation approach is any good for most of the problems involved in those conditions. Concussions, especially, appear quite similar in ME/CFS in how there is such high confidence of rehabilitation approaches and exercise with strong attribution to imagined psychosocial dynamics, but zero reliable evidence. In recent years there has been a shift in the controversy placing everything on some PEM/no-PEM split, but as we know from the garbage heap of pseudoscience that makes up the evidence base for psychobehavioral rehabilitation, there is no actual difference. Even for generic chronic fatigue, no evidence exists to support the idea that this approach makes a significant difference in any other way than generically improving fitness, even though fitness does not equal healthy.

    Maybe in the case of brain injury and nerve damage in MS, but even then it's very difficult to trust the validity of nearly identical research that shares similar methods and garbage methodology. But I wouldn't blame the authors for this. This appears to be "conventional wisdom" stuff that is widely believed as a core component of the profession and, as a result, not open to question. It's an axiom, it doesn't need to be proven or disproven, it just is true.

    So I don't think we can reasonably make progress without addressing the root cause here, mainly being terrible standards and high bias in evidence-based medicine, because even in cases where someone would agree that it may not work with us, it's widely believed that it generally works, even though the evidence is just as poor. The idea is still that it should be beneficial in almost all cases, leading to the belief that it can't hurt, which makes it all too easy to not bother with the lack of evidence and simply go with "well, it's good for everyone so there's no reason it shouldn't be good for you".
     
    Ash, Sean, alktipping and 4 others like this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,589
    Location:
    London, UK
    I also note that they chose to publish in the cardiopulmonary physical therapy journal. Maybe to warn the physios off? But maybe not ideal.
     
    bobbler, Ash, Sean and 4 others like this.
  7. Michelle

    Michelle Senior Member (Voting Rights)

    Messages:
    292
    I can indeed confirm that we Yanks still tend to typically use a kettle on the stove (though I do use an electric kettle here in the bedroom--and @alktipping's comment explains why it takes about as long as the stove). I met my partner, who is in the UK, online and the first time he heard the whistling of my kettle in the background during a call he couldn't figure out what it was. When I told him, he replied with "what are you, Laura f***ing Ingalls?!" :rofl:
     
    bobbler, Ash, Sean and 3 others like this.
  8. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,863
    Sean, alktipping, Hutan and 3 others like this.
  9. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    4,104
    I agree
     
    alktipping, Hutan and Peter Trewhitt like this.

Share This Page