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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Skiffington, Helen OT, BSc Hons1,2; Breen, Ciara MSc, HCM3,4,

Abstract
Long COVID is a disabling condition which affects occupational performance and quality of life. It interferes with activities of daily living, work, and many meaningful life roles.

Cognitive dysfunction is a frequently reported symptom, yet it is commonly overlooked. It is important that cognitive activity is considered when working with people with long COVID, particularly when identifying triggers of post exertional symptom exacerbation.

There are many potential mechanisms that could be driving cognitive dysfunction in long COVID including neuroinflammation, viral persistence, vascular damage, and orthostatic intolerance. It is important to consider these to help guide intervention. The purpose of this clinical perspective is to highlight the debilitating impact of cognitive dysfunction in those with long COVID and share the key role of occupational therapists in this area.

Cognitive dysfunction may be missed on standardized assessments as they may not be sensitive enough due to the episodic nature of symptoms. Occupational therapists can play a key role in this area as they are experts in assessing occupational performance and in providing safe cognitive assessment and rehabilitation.

https://journals.lww.com/cptj/fullt..._brain_fog___cognitive_dysfunction_and.7.aspx
 
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A lot of good stuff in this paper, I think. Especially this paragraph:

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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and I like that they seem to be aware that strategies to counteract cognitive overexertion through pacing, planning, prioritising etc aren't risk-free because they can themselves cause cognitive overexertion.
 
Jonathan Edwards said:
But is is still an advert for unevidenced therapping, even if only occupational therapping.
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Going by the 'Clinical Pearls' summary:

• Cognitive impairment is a common symptom in people with long COVID, and there are many potential mechanisms for these cognitive changes.

• Cognitive activity may be a cause of PEM/PESE and episodic disability in people living with long COVID.

• Assessment should take account of the fluctuating severity of these cognitive symptoms and include a combination of standardized assessment, patient-reported outcome measures, and a history of the pattern of presentation and manifestations in daily life.

• Cognitive pacing is a complex self-management tool that may support the symptom management. It should include consideration of temporal task components such as time use, tempo and temporality, the identification of cognitive scaffolds to support occupational performance, and management of orthostatic factors.
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the recommendations seem sensible to me. Acknowledgement to the patient and their family that cognitive impairment is often reported by people with the Long Covid constellation of symptoms, and that there may be some cognitive impairment, rather than dismissal of the idea is helpful. There seems to be a commitment to examine patterns of impact of cognitive impairment in the individual with the aim of helping the person minimise impacts.

consideration of temporal task components such as time use, tempo and temporality, the identification of cognitive scaffolds to support occupational performance, and management of orthostatic factors.
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In this case, rehabilitation doesn't appear to mean curing someone, but rather helping the patient to work out how to manage around the constraints. e.g. what time of day is thinking work best done, for how long, managing expectations of output, is thinking work best done while lying down? I assume cognitive scaffolds includes things like routines with prompts and lists. The authors seem to actively warn against cognitive exercises as a way to increase capacity.

I have yet to read the full document, but what I have seen seems very good.
 
Hutan said:
the recommendations seem sensible to me
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But seeming sensible isn't evidence is it.

No doubt most people with ME/CFS would prefer to have this author looking after them than a multidisciplinary team of physics and psychologists but the tone is still that 'we know what is best'. And nobody knows if it is actually beneficial.

Hutan said:
In this case, rehabilitation doesn't appear to mean curing someone, but rather helping the patient to work out how to manage around the constraints.
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Which again sounds sensible, but how do they know what to advise. And how do they know that what they teach the next lot to do will be understood by the next lot, and the lot after, or used even sensibly? If it all depends on common sense what is there to teach?

An OT or nurse may well be the best person to fulfil a supportive role of this sort but whenever I read words like 'cognitive' I see theories about dysregulation and all sorts of mumbo-jumbo not very far round the corner. It might be better to say that with experience of seeing lots of people having trouble thinking straight you can probably help others a bit in terms of support. That's all.
 
Jonathan Edwards said:
It might be better to say that with experience of seeing lots of people having trouble thinking straight you can probably help others a bit in terms of support.
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I think that is pretty much all they are saying, along with promoting an awareness that these sorts of cognitive impairments can occur in Long Covid and of some of the specific manifestations e.g. that the impairment fluctuates and that some people report being able to do thinking work for longer if lying down.

(I still haven't read the whole paper.)
 
There are some good, insightful parts:

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.5,58,87Occupational 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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But that's followed by:

Occupational therapists, with their unique skillset of occupational analysis, are ideally placed to design and deliver patient education and intervention in cognitive pacing.
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In terms of education, the best they can do is advise patients to learn their own limits and trust their own instincts. Interventions for cognitive difficulties? There aren't any that could be formalised as advice or training.

OTs can play a important role, especially in employment, education, and housing contexts. They may be the only professionals who really understand the challenges. Why not train them to be really good at those interventions, instead of giving the impression they can somehow do something about cognitive dysfunction?
 
Yes, people with Long Covid can work out strategies for dealing with their symptoms, including constraints on cognition and activity in general. But, a good occupational therapist who is informed either by their own experience or the experience of others, as well as listening to the individual in front of them can provide useful advice. For example, getting an electric kettle that switches off after boiling rather than heating water for tea in a kettle on the stove - obvious, commonsense, but perhaps it takes someone boiling the kettle dry or worse to think of it if it isn't suggested. Or helping someone to identify when they most have trouble thinking (e.g. after a shower, after a long phone conversation, in the afternoon) might help the person optimise scheduling of cognitive tasks.

In terms of 'cognitive pacing' the authors say in the summary:
Cognitive pacing is a complex self-management tool that may support the symptom management. It should include consideration of temporal task components such as time use, tempo and temporality, the identification of cognitive scaffolds to support occupational performance, and management of orthostatic factors.
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So, when demanding cognitive tasks are scheduled? how long to do them for? whether to do them lying down? I don't think they are suggesting anything more complicated or interventional.

I'm definitely a fan of a good pamphlet and a phone number to call if people need more help rather than making pacing a thing that can only be taught by medical professionals. But, I can imagine an occupational therapist running a really useful discussion at a patient support group. And occupational therapists may well be the gatekeepers for the provision of assistance with daily living, or financial benefits, or acceptance that the person has difficulty working. I want them to be aware of most of the things the abstract and summary note. e.g.
Abstract said:
Cognitive dysfunction may be missed on standardized assessments as they may not be sensitive enough due to the episodic nature of symptoms.
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sorry, I have made a couple of edits for clarity
 
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Hutan said:
getting an electric kettle that switches off after boiling rather than heating water for tea in a kettle on the stove
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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.

Hutan said:
when demanding cognitive tasks are scheduled? how long to do them for? whether to do them lying down?
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But most will already have worked this out by the time they've spent months going back and forth to the GP, then waited more months for an OT appointment. The time span from initially getting ill to seeing an OT could easily be a year.

I suspect you didn't mean it in the strict sense, but scheduling things is a GET-like approach that patients should be warned to avoid, not encouraged to do. It puts a corrosive pressure on them to attempt things when they're not well enough, and they'll already have plenty of that.

Hutan said:
I'm definitely a fan of a good pamphlet and a phone number to call if people need more help rather than making pacing a thing that can only be taught by medical professionals.
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Yeah, I agree on the pamphlet/phone line. If long Covid is like ME/CFS, the only person who can really know how to manage their pacing is the patient themselves. Their OT could usefully remind them not to gaslight themselves, but most of their role is assessing them for aids, adaptations and housing, and acting as liaison between work or education and the health, social care and benefits services.

At the moment, other than timely and accurate diagnosis, OTs who actually understand LC and ME/CFS have the potential to make more difference to our lives than anyone else. Partly because they can remove so much of the friction from interactions between services, but mostly because other professionals tend to believe what they say. They have credibility that's often denied to patients. This crucial role in helping people navigate the transition to a very different life is what I'd like see the profession put the emphasis on, rather than encouraging OTs to spend their contact time doing what Jonathan calls therapping.
 
To me it seems like a mixture of sensible advice, unnecessary rehabbing, and muddle-headed Twitter-science about neuroinflammation & so forth, e.g.:
When cognitive dysfunction and PEM/PESE are experienced by the same individual, as is common, 59,61 we propose that education about PEM/PESE and the importance of pacing to avoid PEM/PESE may yield the greatest initial gain by interrupting the cycle of further neuroinflammation and neuroimmune activation.
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As for the specific examples that are mentioned - smartphone apps, diaries, heart-rate monitoring - some patients do report finding these useful but it's not as if they can really be recommended as there's no hard evidence for any particular intervention. Helping a patient adapt to their illness in common-sense, practical ways & advocating for occupational adjustments & adaptations is welcome but I don't see why pwME need therapists to co-create specific "cognitive pacing" plans with them. Patient education sessions, diary-use reviews? If there's one thing pwME don't need it's micromanagement of their lives.
Kitty said:
Is there anybody in the Western world who doesn't use an electric kettle?
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Americans!
 
'When cognitive dysfunction and PEM/PESE are experienced by the same individual, as is common, 59,61 we propose that education about PEM/PESE and the importance of pacing to avoid PEM/PESE may yield the greatest initial gain by interrupting the cycle of further neuroinflammation and neuroimmune activation.'

That to me is a very big wavy red flag. No way should an OT be talking this sort of bullshit to patients. This is where I get off the bus. - as in the bit in the abstract:

Sly Saint said:
There are many potential mechanisms that could be driving cognitive dysfunction in long COVID including neuroinflammation, viral persistence, vascular damage, and orthostatic intolerance. It is important to consider these to help guide intervention.
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It is not legitimate to consider these to help guide intervention unless you actually have some facts.
 
Kitty said:
Is there anybody in the Western world who doesn't use an electric kettle?
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they don't in spain (the spanish that is).
They often make a cup of tea by putting a tea bag in a mug of water and then putting it in the microwave.

eta:
I bought a spanish friend an electric kettle as a wedding present. It was well received.
 
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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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Yeah, people in many places, the US. It is surprising. Also, my 92 year old aunt. I even bought her an electric kettle and still she doesn't use it, but continues to burn out the saucepans that she heats her water in. (And, it turns out that I was doing what we don't want OTs to do, leaping in with a solution before properly understanding the problem. She can't lift a kettle with enough water for a couple of cups, and so she fills up the pot with a teacup, and empties it the same way. The kettle does not allow easy access for emptying the hot water.)

Kitty said:
But most will already have worked this out by the time they've spent months going back and forth to the GP, then waited more months for an OT appointment. The time span from initially getting ill to seeing an OT could easily be a year.

I suspect you didn't mean it in the strict sense, but scheduling things is a GET-like approach that patients should be warned to avoid, not encouraged to do. It puts a corrosive pressure on them to attempt things when they're not well enough, and they'll already have plenty of that.
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Yes, the delay is a problem, but I don't think that's an argument for not ensuring that OTs are well informed. They may well be the ones helping to write the pamphlets for newly diagnosed patients.
Yes of course, not GET-like scheduling. But some people will be working, and having an OT recommendation that supports the person with ME/CFS's preferred timing for work hours or meetings could be very useful in getting accommodations.

Jonathan Edwards said:
'When cognitive dysfunction and PEM/PESE are experienced by the same individual, as is common, 59,61 we propose that education about PEM/PESE and the importance of pacing to avoid PEM/PESE may yield the greatest initial gain by interrupting the cycle of further neuroinflammation and neuroimmune activation.'
There are many potential mechanisms that could be driving cognitive dysfunction in long COVID including neuroinflammation, viral persistence, vascular damage, and orthostatic intolerance. It is important to consider these to help guide intervention.
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That to me is a very big wavy red flag. No way should an OT be talking this sort of bullshit to patients. This is where I get off the bus. - as in the bit in the abstract:
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Yeah, fair enough. I do think it is useful to consider orthostatic intolerance when considering suggestions for managing cognitive dysfunction. If people are trying to do cognitive work at a desk and struggling, it might be a revelation that they could try doing the work lying down. Orthostatic intolerance is a symptom, and working around a symptom is a reasonable thing for an OT to be offering ideas on.

I also read those sentences as essentially saying 'potential mechanisms driving cognitive dysfunction are likely to be biological and therefore probably not amenable to psychological interventions or cognitive exercises'. I was grateful for the fact that the abstract said that these were potential mechanisms rather than certainties. But, from @Nightsong's quote, it looks as though the authors slipped into certainty about neuroinflammation in the text.
 
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