Pulse: Long Covid training course - Dr Shah

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.

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

 

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”.

 

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.

 

Did he step out for a smoke?

 

Assuming of course that he is aware of it.

 

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.

 

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

 

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.

 

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.)

 

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.

 

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.