UK - NICE guideline on Long Covid

A few things I've been thinking about.

There is no mention of PEM, by any other name or definition, or neurological symptoms in general. Some neurological symptoms are acknowledged but they are very restricted, the number is far greater but most patients only have a few so in the end most are basically out of scope here, more likely to fall in the MUS/FND void of doom. Most cases will not fit the guidance in practice as neurological symptoms are the most common and only a handful are acknowledged, we know what happens with checkbox medicine.

There is discussion of MCAS and POTS as comorbidities, but neither are treated adequately in clinical practice, there is no awareness or guidance outside of this one here and they are very poorly-handled. There is certainly no discussion of dysautonomia and how there is a spectrum, with the guidance restricted to POTS, that is all that will be considered and none of the resulting symptoms will be considered, only the elevated heart rate on a tilt table test will be considered and if it fails likely blamed on heart inflammation and told to wait it out. So will MCAS and POTS only be considered as part of LC? Because most people presenting with such symptoms will be met with the standard hostility, "anxiety" and/or MUS/FND, it's handled terribly in practice. Those who fail the tilt table test will have that door closed on them.

So taking a typical physician who is very invested in this and wants to help, has read the guidelines through and through but nothing more than is provided within the NHS framework. Certainly no awareness of PEM or the breadth and variation of neurological symptoms. Mention of PEM will be met with either confusion or hostility, it's not covered and should not persist past a few weeks (even though by definition... ugh whatever). And often exercise is advised for POTS so that is what will be advised, after all they don't have ME and so advice against exercise is not applicable here. Also GET has not been "tried" so maybe it's worth a shot, also feeling worse is normal and won't be identified as PEM because, of course, no mention of it in the guidance.

There are also common things like a stiff neck, not covered either, which will mean the only possibilities to think of will be GBS or maybe encephalitis, not helpful here, adds a lot of confusion.

Then of course the typical symptoms are basically presented as a simple list, without any particular order or emphasis. So all basically equal in importance. Certainly little emphasis on the relapsing-remitting, highly fluctuating (it's mentioned but not emphasized in a way that is nearly clear enough) with post-exertional malaise (or symptom exacerbation). Especially in those with fatigue. Exercise is good for fatigue, and you don't have ME so, against, no contraindication. And fatigue is not emphasized here so clearly it's not "chronic fatigue". Or maybe. Depends.

So what happens to the patients who insist on PEM? Will they be offered an alternative ME diagnosis, an exclusion from this guidance and be discharged? Or will just be ignored because obviously exercise is good and not advised against so you should try?

This isn't even half-baked. The more I think of it the worse it gets.

 

The number of medical staff affected with long COVID, may be the one aspect that may enable this to play out differently.

 

But they are. They both contribute to global warming due to their emissions.

 

Hey, you can see from the picture on that Medscape tweet that the person has ME.Just like the others.

 

Yes, but to be fair, what else could be said? People with motor neurone disease are high and dry too because there is nothing to be done.

 

Medical staff were in the majority for epidemic ME but it didn't help. It is possible that it will work against them because if anyone experienced stress and anxiety during the epidemic it was frontline staff.

 

Questions NHS England and IAPT Have Ignored Over Covid

http://www.cbtwatch.com/questions-nhs-england-and-iapt-have-ignored-over-covid/

This is where that "study" claiming 1 in 5 with Long Covid are suffering from "mental health issues" comes into play. Everything seems to be set up to guarantee the BPS takeover. The only way to avoid it would have been to recognize the failures of the past. Instead: out of scope. Oh, well.

 

BMJ Editorial NICE guideline on long covid by Manoj Sivan, associate clinical professor and honorary consultant and Sharon Taylor, consultant child and adolescent psychiatrist and honorary senior lecturer

The guidance lacks detail on potentially helpful rehabilitation interventions such as breathing techniques, psychological interventions (such as cognitive behaviour therapy), cognitive training (such as memory training), and occupational rehabilitation, perhaps understandably given the current paucity of supporting evidence. The dangers of exercise in some patients, such as those with undiagnosed acute pericarditis or myocarditis, highlight the need for a personalised approach.12 All these aspects of care should be prioritised in future updates.

https://twitter.com/user/status/1341807033532690432

 

The amount of learning I have observed over the last few months is shockingly low. Anchoring is a serious problem in medicine.

Plenty are doing well and adapting but overall... oh boy... it's bad.

 

Apart from this paragraph it's pretty good overall, surprisingly so. But this paragraph is very bad. I'm really not sure what role "acute" is playing here, though.

 

It is becoming increasingly odd to see these proposals for cognitive behaviour therapy without any specifics as to the cognitions or behaviours to be addressed, or or the details of the therapy . I suppose they'll think of something.

 

"A neuropsychologist is interested in the brain's cognitive functions, such as attention, language, and memory. This is different from a clinical psychologist, who mainly focuses on behaviors and emotions and therapy for related concerns."

so what's with the CBT?

 

I am interested to know where this quote comes from. It is becoming clear to me that there are two different 'term of art' usages of neuropsychologist. One is this one, which I am familiar with in neuroscience and philosophy circles and one meaning a clinical psychologist dealing with things like childhood development problems.

 

I assume FND is the model that will be used in the future. Switching to full metaphors, not even bothering to give a convincing explanation, let alone justifying decades of having insisted about their prior justifications.

This new FND model is basically going back in time further than the God of the gaps, straight up to God works in such mysterious ways you can't even attempt to understand it. Substitute mind and you have the exact same thinking. The mind is just mysterious. That's all there is to it. We don't understand it but the mind is adaptable and we can rewire things around it and so that's "rehabilitation". Don't ask how or any evidence to support, it's all a mystery after all. A mystery beyond understanding which they happen to understand, they just can't explain it. Well, technically they can explain it as it's the whole basis of the rehabilitation model but... well... it's just double-complicated or something like that. In the end always the same thought-terminating cliché: you can't prove it's wrong. Which is unscientific but, well, it's a mystery after all so you can't really science it out.

The software-hardware analogy would probably have a few years of play using that, until the next BS replacement cycle. It's so slippery and nebulous you can't even argue against it because it argues nothing. Depends on how long it takes for science to put this nonsense to rest, but this is likely what's ahead. Brain training, DNRS, positive thoughts or whatever.

 

I Googled 'neuropsychologist';
just did it again and the quote is from here
https://www.uwhealth.org/neurology/what-is-a-neuropsychologist/12769

 

Covid-19: Consider overall impact of long covid symptoms when deciding whether to refer, says NICE
https://www.bmj.com/content/371/bmj.m4915

Rapid Response: COVID-19 - To push or pace rehabilitation; the dilemma facing long haulers.
https://www.bmj.com/content/371/bmj.m4915/rr

 

From the 2nd one:

As expected. No one has yet argued what is being "rehabilitated", what stands between now and this much-vaunted "return to activity". The only certainty is that this "return to activity" must involve activity. Somehow. But it must happen and they sure are capable of "delivering rehabilitation", the question of whether it works is an afterthought, after all activity makes people fitter, even in people for whom it doesn't happen. The cognitive dissonance is just irreconcilable.

How much time until we hear about "psychological deconditioning"? That sounds like a possible next big thing.

 

You went and said that out loud!

Bet you an extra tenner donated to David Tuller's next crowd fund campaign that phrase will be appropriated & appear somewhere within the next.....let's give it 4-6 months.

 

Dr. Charles Shepherd has written a rapid response to this editorial:

NICE guideline on Long Covid fails to acknowledge important clinical and pathological overlaps with ME/CFS
The ME Association is providing regularly updated and comprehensive information on the management of post covid fatigue and all the other common symptoms of long covid that overlap with ME/CFS (8). However, the NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. This is a serious omission which requires urgent attention. The practical management of long covid cannot be left to charities and self help support groups.