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

Hutan said:
I do think it is useful to consider orthostatic intolerance when considering suggestions for managing cognitive dysfunction.
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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.
 
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.

A consistent, effective approach to the management of cognitive dysfunction in long COVID has yet to be determined. Given that the presentation of cognitive impairment in long COVID shares characteristics with other neurological conditions, such as concussion, brain injury, and multiple sclerosis, some authors have suggested that similar rehabilitation approaches could be used.69,78,80 While interventional approaches developed for other conditions may have utility in long COVID, the presence of PEM/PESE should influence the selection, timing, and delivery of interventions. The assumption that traditional physical rehabilitation techniques of gradual increase in exercise load would be effective in the rehabilitation of ME has been extensively refuted.29,81 This knowledge has informed long COVID rehabilitation through the guidance against graded exercise therapies or interventions based on them.82,83 Patient surveys and observational studies25,27,28 suggest that the disruptions in energy production, usage, and protracted post exertional recovery characteristic of PEM/PESE also applies to cognitive exertion in long COVID. As cognitive impairment is often targeted for intervention by health professionals using a process training approach which relies on targeted repetition to induce and amplify neuroplasticity,84 we appeal to colleagues to be cautious not make similar missteps with cognitive “exercise,” however well-intentioned.
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Pacing is a complex self-management technique, affecting across all domains of daily functioning including rest and sleep.86 Pacing places considerable treatment burden on a patient group who already have significant symptom burden.5,58,87 Occupational therapists may need to challenge their internalized beliefs, which may include ableism,88,89 to better understand the barriers to pacing posed by social, cultural, and institutional environments. Advocacy efforts at policy, organizational, and/or individual patient level may include building education and awareness of the importance of pacing; highlighting hidden barriers to pacing and participation; seeking funding for modifications to home, school, work, or leisure environments; supporting clients to challenge policies which exclude; or completing reports to support financial entitlements.
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The frequency and duration of tasks should also be considered, but so-called quota-based pacing (i.e. assigning fixed time periods for various tasks) is not recommended. Instead, a symptom-based approach is advised, recognizing that an individual's threshold may vary daily due to the physiology of PEM/PESE.
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Particular attention needs to be given to cognitive tasks in which the person needs to take rest breaks. Unlike the physical evidence of a half-chopped carrot, a half-formed thought is often more difficult to return to. Effective strategies for pausing cognitive work need to be included to reduce the cognitive effort involved in reworking cognitive tasks using limited energy.
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Given the evidence for the impact of total cerebral blood flow on cognitive functioning, positioning to maximize blood flow should be undertaken in clients who present with patterns of impairment suggestive of postural influences on cognitive performance. Therapists may also be involved in the provision of, or advocacy for, equipment to support cognitive activities to be performed in a seated or reclined position.
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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.
 
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It does look far better informed than average. However:
Given that the presentation of cognitive impairment in long COVID shares characteristics with other neurological conditions, such as concussion, brain injury, and multiple sclerosis, some authors have suggested that similar rehabilitation approaches could be used.69,78,80 While interventional approaches developed for other conditions may have utility in long COVID, the presence of PEM/PESE should influence the selection, timing, and delivery of interventions.
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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".
 
Kitty said:
That made me grin. Is there anybody in the Western world who doesn't use an electric kettle? They've been in every home, workplace and hotel room for over half a century.
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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:
 
Hutan said:
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.
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I agree
 
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