UK: NICE Longcovid guideline 2020

If almost anyone who becomes ill in the next year or two can claim they have long Covid and the supports medical or otherwise are better for Covid, people are going have a big incentive to say they have long Covid over ME or CFS.

Edited to add: Indeed, even people with existing symptoms who develop new symptoms could express a concern they have long COVID. Interesting times ahead.

 

This has already prompted a lot of discussion on Twitter.

Also this response for what it is worth:
https://twitter.com/user/status/1317903820047982592

 

Basically amounts to being OK with such prejudicial opinions. I guess as long as this means us and not Long Covid, but it's a poor bet to assume people like Turner-Stokes don't think the same of Long Covid.

 

Regarding "social mystique"
https://twitter.com/user/status/1317949859811463170

 

This now has 109 quote tweets which I think is the most ever for one of my tweets plus 141 other retweets and lots of replies. It's also popular on Facebook but more things can really take off there.

I didn't mention her by name, but I don't think I'm going to be on Prof Turner-Stokes' Christmas card list!

 

I can't see how they know what's in the ME/CFS guideline, as it's embargoed. She can hope for alignment all she wants, but she's not on our committee, so gets no say.

 

That just occurred to me too. Maybe she's intending to read ours and make comments as a stakeholder, before basing the long-COVID guideline on ours. I don't think she could have any influence beyond that, as the guideline is almost finished. It's just awaiting the consultation feedback, of course, after which the last set of changes would be made and it'll be sent for publication.

 

There is some information on the NICE process for development of rapid guidelines:

https://www.nice.org.uk/covid-19

Guidelines about COVID-19

We've developed 22 rapid guidelines with NHS England and NHS Improvement (NHSE&I) and a cross-speciality clinical group, supported by the specialist societies and royal colleges. These guidelines were developed quickly using a different approach to normal and we’re keeping them under review.

https://www.nice.org.uk/process/pmg...-8779776589/chapter/introduction-and-overview

Appendix L: Interim process and methods for guidelines developed in response to health and social care emergencies

 

https://twitter.com/user/status/1318615387907514375


If only if were just this one doctor, and not a whole lot of them with enough influence to have pushed this nightmare into common practice.

I'm trying to remember... there was a presentation posted a while ago. Colleagues of Peter White, I think. Or Jon Stone. It was nearly 100 pages long and had a whole lot of similar quotes, presented the concept of "somatization" as basically too many symptoms. Could be a good starting point. It was especially assertive, presenting the concept as if it were a basic fact of the universe.

 

Lynne Turner-Stokes' presentation appears to be from 2002 -- see the European Association of Psychosomatic Medicine' website where also some more recent presentations by others are listed: https://www.eapm.eu.com/news-publications/presentations/

 

Was it maybe this presentation that you were thinking of, rvallee?

It's 101 slides:

https://dxrevisionwatch.files.wordpress.com/2020/02/mustrainingforgpsth030817.pdf

Managing ‘MUS’ / BDS in primary care

Frank Röhricht MD, FRCPsych Associate Medical Director Honorary Professor of Psychiatry & Nina Papadopoulos Senior Dance Movement Psychotherapist MUS Project Manager and Clinical Supervisor


Per Fink also did a lengthy one (87 slides):

https://dxrevisionwatch.files.wordpress.com/2019/09/plenary_prof_fink.pdf

Syndromes of bodily distress or functional somatic syndromes - where are we heading?
Lecture on occasion of receiving the Alison Creed Award 2017
Prof. Per Fink MD, PhD, Dr.Med.Sc

 

https://twitter.com/user/status/1318646527800299527

 

Thanks! Neither, unfortunately, but the Fink one looks like it has pretty much the same content, these ideas are very repetitive.

Found it! https://dxrevisionwatch.files.wordpress.com/2010/01/hackettaward-creed.pdf. At least the one I was thinking about. I knew it had a neon blue background but it's seriously impossible to tell those apart, they all say the same thing, I have no idea why they keep doing their own presentations, they're all the exact same.

 

I did a quick skim of Turner-Stokes' slides. Not much to say, entirely based on post-ICU care and the rehabilitation is strictly based on those circumstances or respiratory, but it's entirely based on assumptions that have little to do with Long Covid, all generic. Zero relevance to... whatever post-viral illness should be called generically.

The only reference in the slides to either PVFS or CFS is: it's not CFS, maybe some overlap but it's clearly different, which Turner-Stokes is not competent to judge so whatever.

I saw quickly in the comments on the left side that there seems to be discussion of "functional disorders". I listened a bit and it seems mostly "we're in the business of rehabilitation" drivel, getting people back to work (what is rehabilitated? unsaid, it just has to be rehabilitated I guess, no need to understand anything). Somehow leaves out that no one has ever figured this stuff out and thus the discussion is about as pointless as talking about unicorns.

Some comment from T-S that clearly shows she only thinks of CFS as fatigue, totally clueless. At around 47-49min if someone wants to listen to that part. Recommends pacing and CBT. Again, completely clueless, she shouldn't be talking about thing she doesn't understand.

Oh, "adapting pacing is rising as an approach", sure, Greenhalgh. It totally is! You are very well informed. Because adaptive pacing is a real thing that exists! Ugh.

 

That 108 slide long Creed presentation archived on my website dates from 2009 [1].

There is a Reference List that accompanies the presentation:

https://dxrevisionwatch.files.wordpress.com/2010/01/hackettaward-creed-refs.pdf


Emeritus Prof Francis Creed was a member of the American Psychiatric Association's DSM-5 work group for Somatic symptom disorders. Creed and colleagues in Manchester carried out at least one of the field trials for Somatic symptom disorder.

Creed was also a key member of the ICD-11 sub working group for revision of the ICD-10 Somatoform disorders that developed "Bodily distress disorder" for the ICD-11 core edition. He has also been a key member of EU MUS working groups that have included Fink, Henningsen and PD White.


Creed was co-author of the 2011 book:

Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services
Cambridge Medicine (Hardcover) Kindle Edition by Francis Creed (Editor), Peter Henningsen (Editor), Per Fink (Editor)

a text which developed out of a white paper published by one of these EU MUS groups.


1 The Academy of Psychosomatic Medicine, Bethesda, Maryland, US. The Organization for Consultation and Liaison Psychiatry Publishers of Psychosomatics, 2009 ANNUAL MEETING in LAS VEGAS. November 11–14, 2009.

Two other DSM-5 SSD work group members, Joel E Dimsdale and Lawson Wulsin also gave presentations at this 2009 annual meeting.

 

https://twitter.com/user/status/1326652623957741576


https://twitter.com/user/status/1328665037851029504

 

Wow.

 

Yes, Wow!

Barbara Melville-Jóhannesson is a science and literature lecturer, writer and founder of @LongCovidScot

 

This post copied and following posts moved from NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021
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It's those baseless affirmations, confidently incorrect, that make the strongest case for precise guidelines. Decades of free-for-all dysfunction have made it imperative. This is just a belief, an aspiration, that just happens to entirely lay the fault for failing on the patient, as it can always be argued that the patient did it wrong.

And note this is Long Covid, so the stakes have basically at least doubled. Has anyone noticed whether NICE understand this? That their recommendations will apply for Long Covid regardless of what they put in their LC guidelines? Whenever those happen to be published.

https://twitter.com/user/status/1438885872359907328