Pulse: Long Covid training course - Dr Shah

[Hutan]

One of the Pulse webinars provided for the training of medical professionals in the UK. The 1.5 hours presentation counts for 0.5 CPD credits.
https://pulse365.uk/resources/long-covid/

The first part is presented by Dr Waqaar Shah.
"clinical director, Wandsworth CCG and chairman of the expert advisory panel on the management of long-term effects of COVID-19 at NICE

Dr Waqaar Shah is chair of the independent expert panel for the NICE / SIGN / RCGP Managing the long-term effects of COVID-19 guideline. At South West London CCG, he is a clinical director and also the clinical lead for ophthalmology. He works as a GP partner at Chatfield Healthcare in London, where he is also a GP appraiser and a GP trainer."

I thought it was worth recording a number of the points he makes as he holds an influential position with respect to Long Covid. I think it's an insight to how GPs might be thinking about Long Covid.



Background

The symptoms are similar to post-SARS-1, post 1918 flu, 'seems to be a post-viral situation'. No mention of ME/CFS here.

Notes that we don't know the cause yet, although there is speculation.


Mentions that there are trends in who is infected - female, older, poorer, fatter (no psychological factors though). He later talks about people of certain ethnicities, and people of 'low socio-economic achievement backgrounds'


He's happy to call any sort of persisting symptoms 'Long Covid'. He notes that there are two clusters - the tiredness cluster and the respiratory cluster.

Mentions MCAS, histamine diet, 'although the jury is out'.

Good news! there is a drop off of symptoms over time which is 'reassuring, I think'.

The most common symptom is fatigue - 93% of people with Long Covid

Mentions psychological symptoms - anxiety, depression... No comment made about how these might be secondary to having a life-altering illness


Brain fog: Notes that a patient of his is a driving instructor who has found that he can't assess danger on the road quickly enough to conduct his work safely.

Fatigue

He says, in relation to a patient presenting with fatigue, when the medical professional is thinking 'Long Covid',

"we have to do a little bit of work just to make sure that we have thought about alternative diagnoses as well, because we have situations where sometimes we feel certain that someone has Long Covid given their presentation, their background, the course of the Covid-19 infection, and that leads us to a conclusion that that particular patient has Long Covid. And we could easily label that patient with Long Covid. But I think we just need to take a step back and make sure that, are we are doing the right thing by, at that stage, labelling that patient with Long Covid. So, the patient presents with fatigue after Covid infection. Of course it is likely that this patient has Long Covid, and fatigue is a symptom of that Long Covid, however we have a duty to make sure that we have excluded all the other more sinister causes or more serious causes of fatigue.


So, when you have someone with fatigue, just maybe spend a couple of seconds thinking about, could it be myocarditis?, could it be pericarditis?, pericarditis does present with fatigue, as does heart failure. And, I've heard stories of patients who have been labelled with Long Covid when they've actually, finally, been given a diagnosis of heart failure which was starting to decompensate. So, sometimes we can get coincidental pathologies at the same time as Covid-19 infection and it can be difficult to tease out between the two.


Anaemia, hypothyroidism, vitamin deficiencies and adrenal suppression are other causes of fatigue as well. And of course these are relatively small print, certainly adrenal supression is a small print diagnosis. But it's worth just spending a couple of seconds thinking on the possibility 'is there anything else in the history that might support a more rare diagnosis of fatigue. As I said, statistically it's likely to be Long Covid. But we are diagnosticians, we are, in a sense, medical detectives and, to that end, our job is to make sure that we have covered all the bases before we ascribe a diagnosis.


Now, the other thing about fatigue is that it could just be an exacerbation of someone who has had chronic fatigue syndrome or ME. And I do recognise and concede that it is very difficult to tell the difference between fatigue from Long Covid and fatigue that's just a worsening of chronic fatigue syndrome as well."


Suggests that sometimes a referral to cardiology can be useful.

18 mins
"I think it is now beyond doubt that fatigue is real and it impacts on sleep quality"
He goes on to talk about sleep hygiene e.g. not having coffee or Coca Cola just before bed, the usual.
Sleep techniques, relaxation techniques.


"I certainly don't know a lot about relaxation techniques, but, I'm certainly no stranger to opening a book and just reading about the more common relaxation techniques that I can easily teach my patients, or we can maybe refer people to other resources, other organisations that may be able to help patients with relaxation techniques because that sometimes has a positive impact on patient's fatigue. So, it's worth doing and it doesn't cost much at all, or it doesn't cost anything but it may make a big difference perhaps to some people.


Mentions that it's useful to encourage people to slow down "a little bit" and reprioritise. He stresses planning and delegation.


"The less they do, the less they are likely to reach a point where their fatigue then kicks in all of a sudden."


"I think gentle activity is quite helpful in managing fatigue. Gentle activity actually prolongs the ability of a person to try and do more in their day."
Suggests that if someone normally goes jogging, that they initially limit their activity to slow walking but then increase that activity over time, taking rest as needed.

Diet - "there is some evidence that good nutrition helps manage fatigue and allows people to manage better with their symptoms."

22 minutes - the second cluster with respiratory symptoms.

Alternative diagnoses are mentioned for new onset breathlessness. Secondary review is suggested.
Management suggestions are given - pacing, breaking tasks into smaller bits.

26 minutes - change of lifestyle

Mentions not underestimating the psychological impact of having to reduce activity.

"once you can ..., build a good rapport with these patients and get them on board, and once you can have that really shared decision-making situation where they trust what you say and your advice is very meaningful and accepted, then you can work together with them."​

Also says that it's important that people do keep trying to do something though.

"because some people might take this consultation with you as a green light to just rest and not do anything at all, and I'm not sure that that is terribly helpful either. So, I think it's still advisable to continue doing the things that may cause a feeling of mild breathlessness."​

​

28.40 - myalgia

Most common pain is in back and shoulder - notes ICU treatments can cause this.
"back pain and shoulders are the most commonly reported sites for back pain"

Alternative diagnoses are discussed.

"...polymyagia rheumatica..., GBS, multiple sclerosis - these are enormous conditions. So, again we just need to spend a few seconds, thinking 'how likely is this person having any of those symptoms that we mentioned, any of those symptoms, do they have any peripheral neuropathies that are not attributable to Long Covid but may be due to diabetes? So, again, it's just worth spending a couple of seconds just going through a differential in your mind. And, if you feel that there is evidence of a significant condition being present, then of course please do refer appropriately or investigate appropriately as well.

Now, if we are sure that myalgia is really down to Long Covid, then we can signpost them to information and self-management services. I do believe that most areas now, certainly in England, have community Long Covid clinics. And so, it's really helpful to refer these patients to these settings. Do you know what? Anecdotally, for my patients, they've said that they have derived enormous enormous benefit from being referred to these Long Covid clinics in the community. I know that the government has allocated lots and lots of funding for these clinics, perhaps not enough some may say, but nonetheless there is some coverage available I think in most areas of England. I'm hoping in Scotland and Northern Ireland and Wales there will be some degree of coverage as well. But, certainly I know for a fact in England that that is the case. So, you know, referring these patients to these services might be one of the best things we can do for these patients.
​

For myalgia: pacing, stretching, strengthening exercises and relaxation techniques are helpful, gentle physical activity, over-the-counter painkillers. For some patients, refer to a pain clinic, physiotherapist or cognitive behavioural therapist.

Brain fog 34 mins

Alternative diagnoses - e.g. anxiety, dementia
Acknowledge that they have a problem
Advise patients on reducing distractions
"Getting them to play sudoku or scrabble actually is helpful because it enhances their ability to pay attention to things as well"
Pacing, using a task list, keeping a record of what they have achieved ("very very helpful, I totally recommend it as well", good diet, regular exercise, "practicing mindfulness is really important".

Role of the GP 35 mins

• Supporting the patient
• Excluding alternative diagnoses
• Referring to self-management resources like Your COVID Recovery website
• Referring to the community Long Covid clinics

"Patients say that they've often not been listened to"
Listening and acknowledging the impact of the illness "will be super helpful and I think our patients will really thank us for taking that approach as well"

"Reassurance I think is again underrated, and is really really helpful. Patients are looking to us for answers and if we can reassure them, then maybe that's the most valuable intervention that I personally could do as a GP."

The English National Opera's 'breathe' programme gets a mention twice as being 'really helpful', as is referring people to counselling services.

"There is no easy fix for Long Covid symptoms, sadly. But with the support and rehabilitation and with the help from the Long Covid clinics we can support the patients to a great deal of satisfaction, both from our point of view and from the patients' point of view."

39 min Q&A starts

 

[Hutan]

I'm running out of energy fast and haven't listened to the second section yet.

I'm sorry for the long post above, but I just thought it was all so revealing. Dr Shah appears to be a perfectly nice and caring person, and he's the chair of the independent expert panel for the NICE Long Covid guideline. So, this is pretty much state of the art thinking about Long Covid care; it's probably as good as it gets.

And it makes me despair. There's no mention of a subset of Long Covid being ME/CFS. There's no mention of PEM, or anything remotely like it, no concept of delayed impacts of physical activity. There is advice for patients to pace and take things easy, but exercise is still recommended for the grab bag of conditions that is Long Covid.

It's all so incredibly patronising.

"I certainly don't know a lot about relaxation techniques, but, I'm certainly no stranger to opening a book and just reading about the more common relaxation techniques that I can easily teach my patients, or we can maybe refer people to other resources, other organisations that may be able to help patients with relaxation techniques because that sometimes has a positive impact on patient's fatigue. So, it's worth doing and it doesn't cost much at all, or it doesn't cost anything but it may make a big difference perhaps to some people.

I've copied that bit from above because it demonstrates the attitude that we so often see. We patients can also can read up on relaxation techniques and good diet and sleep hygiene and we almost certainly have, if we are suddenly so sick that we are struggling to work. We don't need our doctor to google a bit about relaxation techniques and then spend part of the precious 15 minutes we have with them attempting to tell us what they read.

Throughout, Long Covid is minimised as something that is less worrisome than most other alternative diagnoses. And, no need to worry, it's all under control.

"Reassurance I think is again underrated, and is really really helpful. Patients are looking to us for answers and if we can reassure them, then maybe that's the most valuable intervention that I personally could do as a GP."

I guess that they can say to a patient who has had persistent fatigue for a month that most people recover. But, I'm picking that the patient who has had that persistent fatigue for two years and can't work anymore is not going to find Dr Shah's reassurance worth much at all. And, if that's the most valuable intervention he can offer, well, there are going to be quite a few people who aren't that happy.


As for the 'take a couple of seconds' to consider alternative diagnoses which is suggested multiple times. While I appreciate Dr Shah's idea of not immediately dumping people in the heap with the Long Covid label, these are life and death decisions in some cases, and certainly people with a Long Covid label won't be getting any useful treatment. So, someone's future is damn well worth worth a lot more than a cursory effort at diagnosis. I fear that this presentation will help consign older fat women of "lower socioeconomic achievement", ticking all of the yet to be firmly evidenced boxes of being at high risk of the amalgam of conditions that is "Long Covid" as they do, to that Long Covid label with very little investigation being done at all.

There's enormous irony in reporting that patients say that they often haven't been listened to, and that listening is really important. And then presenting this as a response to Long Covid that is even vaguely satisfactory, let alone suggesting that patients can be supported to a "great deal of satisfaction".

Sudoku for brain fog, to re-train our ability to pay attention. And it's presented with such certainty.
On the plus-side, there's not much mention of BPS theories. A bit of deconditioning, but nothing directly about defective personalities.

 

[Hutan]

The second section is presented by a dedicated respiratory specialist who passionately encourages the listeners to work to get their patients to stop smoking. Dr Shah had to step out for a while. The respiratory physician discusses microclots at the 1.04 mark though.

Dr Shah is back at 1.12.

 

[SNT Gatchaman]

Thank you Hutan for recording that. I agree it's a good insight into basic GP thinking. I don't think it's unfair to summarise all that as simplistic, superficial and unlikely to be helpful in (m)any cases.

"Now, the other thing about fatigue is that it could just be an exacerbation of someone who has had chronic fatigue syndrome or ME. And I do recognise and concede that it is very difficult to tell the difference between fatigue from Long Covid and fatigue that's just a worsening of chronic fatigue syndrome as well."

Yes, there's probably a very good reason for that difficulty.

 

[hibiscuswahine]

Thanks @Hutan, that is a lot to share and not easy listening. Totally agree

The perjorative statement of “fatter” sets the tone (totally unacceptable, locally) and continues downhill - finishing with the penultimate statement of ignorance “permission to rest”.

Not overly surprised at their total lack of knowledge of ME, PEM, cognitive impairments, etc

Giving someone a diagnosis of Long Covid/Post-Covid 19 syndrome (as known locally) can be given as soon as clinical criteria is reached. All diagnoses are working diagnoses until new information appears.

No mention of assessing someone’s cognitive impairment and safety issues arising from this (driving, working in hazardous environs, using power tools, cooking etc) except some random advice on “brain fog” using some brain “games”.

 

[Sean]

On what evidence has Dr Shah based his management recommendations? LC has not been around long enough to have a good evidence base yet.

 

[Jonathan Edwards]

Now, if we are sure that myalgia is really down to Long Covid, then we can signpost them to information and self-management services. I do believe that most areas now, certainly in England, have community Long Covid clinics. And so, it's really helpful to refer these patients to these settings. Do you know what? Anecdotally, for my patients, they've said that they have derived enormous enormous benefit from being referred to these Long Covid clinics in the community. I know that the government has allocated lots and lots of funding for these clinics, perhaps not enough some may say, but nonetheless there is some coverage available I think in most areas of England. I'm hoping in Scotland and Northern Ireland and Wales there will be some degree of coverage as well. But, certainly I know for a fact in England that that is the case. So, you know, referring these patients to these services might be one of the best things we can do for these patients.
For myalgia: pacing, stretching, strengthening exercises and relaxation techniques are helpful, gentle physical activity, over-the-counter painkillers. For some patients, refer to a pain clinic, physiotherapist or cognitive behavioural therapist.

This section makes it clear that Dr Shah is just making things up as he goes along.
There is a pretence of having some knowledge or control of the situation.

 

[RedFox]

The second section is presented by a dedicated respiratory specialist who passionately encourages the listeners to work to get their patients to stop smoking. Dr Shah had to step out for a while. The respiratory physician discusses microclots at the 1.04 mark though.

Dr Shah is back at 1.12.

Did he step out for a smoke?

 

[Hutan]

The perjorative statement of “fatter” sets the tone (totally unacceptable, locally) and continues downhill - finishing with the penultimate statement of ignorance “permission to rest”.

Not overly surprised at their total lack of knowledge of ME, PEM, cognitive impairments, etc

Giving someone a diagnosis of Long Covid/Post-Covid 19 syndrome (as known locally) can be given as soon as clinical criteria is reached. All diagnoses are working diagnoses until new information appears.

No mention of assessing someone’s cognitive impairment and safety issues arising from this (driving, working in hazardous environs, using power tools, cooking etc) except some random advice on “brain fog” using some brain “games”.

I need to clarify. Sections with speech marks are direct quotes. For the content that doesn't have speech marks, I have summarised and may have used different words.

Dr Shah didn't use the word 'fatter', I think. It was 'higher BMI'. (I think the finding that Long Covid occurs more often in people with a higher BMI is probably an artefact of people who have a higher BMI are likely to be older and to have additional co-morbidities. So, people with a higher BMI may be at more risk of some sort of post-Covid conditions, although not necessarily something that looks like ME/CFS. The evidence for people with a higher BMI being at more risk of ME/CFS is very thin indeed.)

Regarding cognitive impairment - my impression was that Dr Shah had a reasonable knowledge of the impact of Long Covid on cognitive dysfunction. He certainly wasn't dismissing it. He did mention that cognitive dysfunction could make some jobs unsafe. It's just odd that he thinks games of scrabble are going to make any material difference.

I certainly didn't get the impression that Dr Shah is awful or doesn't care. But, he's having to work hard to ignore ME/CFS and the knowledge associated with ME/CFS.

 

[Andy]

But, he's having to work hard to ignore ME/CFS and the knowledge associated with ME/CFS.

Assuming of course that he is aware of it.

 

[Hutan]

He was and is chair of the independent expert panel for the NICE / SIGN / RCGP Managing the long-term effects of COVID-19 guideline. I think he's seen that document through two versions, both of which have involved public consultation. Science for ME made submissions to both the first and second versions of the guideline; we mentioned ME/CFS and PEM, and we were not alone in doing that. The Long-term effects Guideline specifically noted that ME/CFS literature was excluded from consideration.

I'm not entirely clear what 'chair of the independent expert panel' means - the authors of the Long Covid document are not shown on the NICE website. However comments Dr Shah made suggested that he had put significant time into contributing to the guideline, including discussing the illness with patient representatives who were also part of the process.

If Dr Shah is not aware of the fact that a large percentage of people with persistent symptoms following Covid-19 meet ME/CFS criteria or that PEMis a symptom, then he has not been following the literature. Which would be odd for someone who is thought to be such an expert that he would be invited to educate UK primary health professionals on Long Covid.

 

[rvallee]

Ugh. So weak. Not even half-way there to what much of the patient community already was by Fall of 2020, published even. It's missing so many things, clearly showing they don't listen to patients at all, can't even seem to take in information without interpreting with a training that excludes this very category of illness, doesn't even allow it. The tell that patients find the LC clinics immensely useful is just ridiculous, they are widely criticized as terrible, a cruel joke in most cases.

Always what we find is the perspective of people who aren't experiencing this, aren't able to process the information they're given, have zero stake in the outcome and in fact cannot even tell the difference, haven't even bothered to learn the basics that have been known for decades. Really making it up as they go along, the same way as before, with the same outcomes, and they can't even tell the difference.

Good intentions are useless when professionals are simply failing like this, simply don't understand the stakes and therefore put a superficial effort that doesn't even come close to what complete amateurs with zero medical training have known and understood for years by now.

It's not defensible to allow for anyone involved in this not to be very aware of ME/CFS and its history. Even for amateurs it's actually rare that they aren't aware of it, whether they want to stay separate or not. Most understand what it means for them, and in forums it's been a long time that no one expects any help from the medical profession, the only hope is natural recovery. It's not normal for professionals to miss out on such basic stuff, it's inexcusable. I would be embarrassed to be this bad at my job, even when I started I wasn't even close to being as bad at anything I was paid to do.

 

[hibiscuswahine]

I need to clarify. Sections with speech marks are direct quotes. For the content that doesn't have speech marks, I have summarised and may have used different words.

Dr Shah didn't use the word 'fatter', I think. It was 'higher BMI'. (I think the finding that Long Covid occurs more often in people with a higher BMI is probably an artefact of people who have a higher BMI are likely to be older and to have additional co-morbidities. So, people with a higher BMI may be at more risk of some sort of post-Covid conditions, although not necessarily something that looks like ME/CFS. The evidence for people with a higher BMI being at more risk of ME/CFS is very thin indeed.)

Regarding cognitive impairment - my impression was that Dr Shah had a reasonable knowledge of the impact of Long Covid on cognitive dysfunction. He certainly wasn't dismissing it. He did mention that cognitive dysfunction could make some jobs unsafe. It's just odd that he thinks games of scrabble are going to make any material difference.

I certainly didn't get the impression that Dr Shah is awful or doesn't care. But, he's having to work hard to ignore ME/CFS and the knowledge associated with ME/CFS.

Thank you for clarifying, and I apologise, there is so much wrong in his discussion to GP’S and of course. I have not listened to the presentation and you have transcribed it from your own cultural perspective and experience.

Higher BMI’s do seem do be a trend across LC. For example in countries like Australia or New Zealand. There are cultural groupings with higher BMI, which is only partially unrelated to socio-economic groupings, due to a high proportion of Pasifika people (whose BMI does not correlate well compared to Non-Pasifika due to genetic determinants). Age, ethnicity and gender are also not a predictor of LC according to data just arisen in New Zealand.

I have my concerns with many things in this discussion especially around EBM - contested illnesses (MCAS), this is not an ICD-10 classification, it is a poorly understood illness so giving permission to GP’s to use such diagnoses creates confusion for patients and other doctors. PwLC should be given evidenced based information on this, (and although this is not my specialty, and there are more informed people here in this forum), I would say “there seems to be a problem with the immune system which for some people causes a range of allergic-like reactions going from simple rashes to severe manifestations, suggestive of mast cell activation”.

He had plenty of opportunity to also discuss the similarities between ME/CFS and that some patients with ME with features of mast cell activation also have benefited from treatment with antihistamines (and other medications) if this is a problematic symptom and then what some LC patients find helpful eg. a low histamine diet.

I will have to presume that General Practice Practitioners take on board the driving instructor analogy. I don’t think GP’s really understand the basics of cognitive impairment in ME/LC (once known neuropsychiatric disorders due to covid has been excluded by physical and mental health assessments).

Many LC patients are getting a diagnosis of ME/CFS but get no further cognitive testing with a MOCA or MMSE when they describe brain fog and no offer to have cognitive rehabilitation by a professional. It can be hard to communicate this to a GP who has no idea of PEM, orthostatic stress, stigmatisation etc.

Edit: typos

 

[Sean]

Good intentions are useless when professionals are simply failing like this, simply don't understand the stakes and therefore put a superficial effort that doesn't even come close to what complete amateurs with zero medical training have known and understood for years by now.

It's not defensible to allow for anyone involved in this not to be very aware of ME/CFS and its history.

This.

 

[Hutan]

Thank you for clarifying, and I apologise, there is so much wrong in his discussion to GP’s from my point of view, as a retired psychiatrist in Ao/NZ (there are considerable cultural differences in his advice and conceptualisation of the domains of health) and I only had time to make a brief initial comment. And of course. I have not listened to the presentation and you have transcribed it from your own cultural perspective and experience.

I have been accused of being too flippant a few times in my life, I guess it's a failing of mine. My use of the word "fatter" is probably an illustration of that. I was trying to make a point about the prejudice that is being applied - I think many medical professionals really want to believe that ME/CFS and LC is something that other people get, the ones who are too fat, too poor, too underachieving, too female. Unfortunately, the fact that lots of their colleagues have developed it make it much harder to successfully sustain that 'othering'.

Higher BMI’s do seem do be a trend across LC, including locally in our population due to Ao/NZ’s cultural groupings which is partially unrelated to socio-economic groupings, due to a high proportion of Pasifika people (whose BMI does not correlate well compared to Non-Pasifika due to genetic determinants). Age, ethnicity and gender are also not a predictor of LC in Ao/NZ

Do we have data on LC by ethnicity in Aotearoa NZ?

Many LC patients are getting a diagnosis of ME/CFS locally but get no further cognitive testing with a MOCA or MMSE when they describe brain fog and no offer to have cognitive rehabilitation by a professional.

Do you think cognitive rehabilitation by a professional would be helpful?

 

[hibiscuswahine]

I have been accused of being too flippant a few times in my life, I guess it's a failing of mine. My use of the word "fatter" is probably an illustration of that. I was trying to make a point about the prejudice that is being applied - I think medical professionals really want to believe that ME/CFS and LC is something that other people get, the ones who are too fat, too poor, too underachieving, too female. Unfortunately, the fact that lots of their colleagues have developed it make it much harder to successfully sustain that 'othering'.

. Do we have data on LC by ethnicity in Aotearoa NZ?

. Do you think cognitive rehabilitation by a professional would be helpful?

1.The latest LC study by Vic Uni of approx 780 people, a small sample of the population, I haven’t read the selection criteria but it’s the first. It is not a full epidemiological survey of the population but they are very hard to do.
https://covidaotearoa.com/wp-conten...kawe-o-Mate-Korona-Full-Report-2023-01-24.pdf

2.Yes. But it is likely to be a scarce resource but possibly could be delivered via LC clinics locally, by a psychologist/GP to do MOCA for initial assessment of function (ideally needs to be face to face to overcome communication difficulties - or a more detailed neuropsych assessment - longer and more expensive but a gold standard test for cognition) and then perhaps group education via Telehealth, written resources for pwLE, family and friends etc. Occupational therapists know a lot about this too, working with people with dementia and head injury. Some nursing practitioners also understand this via their work in this area too.

People could get validation for their experience now (very important), the things likely to worsen cognition (PEM, Orthostatic stress etc) an increasing hierarchy of quality education on cognitive task demands etc, how to break tasks down etc, not multitasking, dealing with frustration of having it, little techniques to help concentration and staying on task, perhaps with a range of options that suits the culture and preference without going into overhyping the rehab with unrealistic promises and long scientific or pseudoscientific discussions on what works or not which is still unknown.

I am hoping this will be included in LC clinics in Ao/NZ but will take time to see what is delivered.

 

[Peter T]

Do you think cognitive rehabilitation by a professional would be helpful?

If ‘brain fog’ is the result of an ongoing medical condition such as impaired functioning of the blood brain barrier or reduced cerebral profusion, I would not expect cognitive rehabilitation aimed at improving functioning to be effective. What is needed is to identify the underlying cause and treat that.

However if you are looking at impairment from a one off event occurring during an acute infection then it would be worth looking at whether rehabilitation could improve functioning, in the same way that physio might improve walking following a broken leg.

But there is also an argument for informed support helping people adapt to an ongoing deficit which could loosely come under the heading of rehabilitation. For example I have a reduced short term memory (digit span) which means I can not read a phone number then hold it in memory long enough to dial it, so I have to put my finger on each digit and dial it one at a time or alternatively when driving I can get lost so I always use my SatNav even on familiar routes. Here what is important is to help the individual understand what is breaking down and then encourage them to develop a problem solving approach. So the clinician does not set out to solve every problem but help the patient be able to identify where things are breaking down, eg memory, information overload, novelty, distraction, etc, so they can then come up with ideas themselves or know what to ask for help with. (To know when to lie down and wait for things to get better before doing a cognitive activity.)

 

[Trish]

It sounds from what you say, @hibiscuswahine, like cognitive rehab. is teaching people strategies to cope with daily life with reduced cognitive function, so it's about management, not treatment. A bit like pacing is management, not treatment for ME/PEM. Neither leads to objectively increase cognitive or physical capacity, but both enable people to make the best of what they have.

Have I understood correctly?

 

[Peter T]

It sounds from what you say, @hibiscuswahine, like cognitive rehab. is teaching people strategies to cope with daily life with reduced cognitive function, so it's about management, not treatment. A bit like pacing is management, not treatment for ME/PEM. Neither leads to objectively increase cognitive or physical capacity, but both enable people to make the best of what they have.

Have I understood correctly?

In practice often rehab does not clearly make the distinction. Patients will be given activities that are on the edge of what they can do and gently encouraged to push at their limits. If they seem to be responding well then rehab continues and if not it is stopped, without anyone clearly defining what the purpose or the mechanism is.

 

[hibiscuswahine]

Yes, I agree the term rehabilitation has this element of stretching the limits (and all the hopium of the current trend of neuroplasticity will fix all your problems). Perhaps have a new word. Top of my head, I would call it cognitive skills or cognitive tools. This would validate the experience and also look at awareness of the range of cognition, baselines, fluctuations, factors that may cause deterioration etc.

Many people here may have an understanding of cognition and their cognitive impairments but often it is useful to take simple structured approach and assume people only know the most basic things and then work up.

Groups can be good for this as people can share experiences and often teach themselves collectively but a trained and qualified facilitator is required. (I have done some group work in MH - education, distress tolerance skills, relaxation skills, mindfulness techniques etc)

(This also has a lot of cultural salience for me, in mental health practice we teach people a variety of physical and mental health skills in many domains but also the established cultural practice in Ao/NZ whereby you collect knowledge/skills/tools into a woven kete (basket) that you can retrieve when times get difficult and also to share with others communally.)

I do know a few people with ME with clinical depression and anxiety disorders who found an understanding of their cognition and taught ways to manage some of the determinants for fluctuating ME symptoms, really helpful in conceptualising their ME as a biomedical illness and how it differs from depression, anxiety and other mental health problems.