UK - NICE guideline on Long Covid

It'll be interesting to see if the psychs make the usual mistake of assuming that a patient who is stressed because they have long covid, with all that entails, develops long covid because they were stressed.

Edit - victim of autocorrect

 

https://twitter.com/user/status/1313458556356767744



Edit:

Dr Jo Daniels has since removed both of her Tweets. I have a screenshot of the first of these two Tweets.

 

https://twitter.com/user/status/1313466644929351681

 

Jo Daniels (Senior Lecturer Clinical Psychology, University of Bath; Chartered Clinical Psychologist, North Bristol NHS Trust) is a committee member for the revision of the 2007 CG53:

Draft guidance consultation 10 November 2020 - 22 December 2020
Expected publication 21 April 2021

https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list-3

 

Well Jo Daniels, no, we don't know what works for ME/CFS because there's been naff all by way of decent quality research.

On the other hand we do know what doesn't work & that is CBT & GET. By CBT I specifically mean the directive CBT inflicted on many ME patients. Which CBT do you mean, as you haven't made that clear and seem to be implying in your tweet ( see post #23 above) that the CBT provided is the same regardless of the medical condition. We all know this isn't true.

#ShopBagPhobia

 

Perhaps, in a display of solidarity and co-operation, it might be suggested that Jo Daniels be seconded to work on Long Covid.

She could advise on the obvious anxiety felt by some patients about being mistaken for an anxiety ridden ME patient.

Though this would, of course, be unfair to the silent majority.

 

I was just about to respond to Jo Daniels with

"Plus ça change, plus c'est la même chose..."

but she appears to have removed her two Tweets.

I have a screenshot of the first of her two Tweets.

 

Very weak. No one has yet argued the idea behind rehabilitation other than deconditioning, which is clearly absurd in this case. It's assumed without basis. There is no useful evidence for any "interventions" that are effective at any of the symptoms. We have to know what's going on before we start brute-forcing various random treatments, what is this nonsense, seriously?

Research, we need research. Where does the idea that we can "rehabilitate" or find treatments for things we clearly don't understand and have never put any significant efforts into come from? This approach can go on literally for decades without making any progress, it already has proven this, that it is completely impervious to outcomes and incapable of learning from experience. What is the expectation here? That this will suddenly give results doing the same things that have failed for decades? How long do they expect long haulers to wait up? 10 years? 40 years?

Very disappointed to be honest. This is a very naive approach that simply ignores the context that lead to here and now. It pins hope on a failed model that has produced nothing but stagnation while ignoring all the factors that played a role in guaranteeing failure at being ready for something that was predictable. This isn't going well at all.

And of course Jo Daniels butted in trying to sell CBT, for no other reason than this is what she sells. I was told this was disqualifying for the NICE committee, to have a clear public position about specific outcomes. A "strong proponent" for CBT, despite the fact that all the evidence shows it to be useless for this exact issue.

https://twitter.com/user/status/1313488068222111745

 

This is frankly a supply-side approach. It isn't based on need, it's based on supply, on what the health care system wants to offer and provide for. A solution in search of a problem that completely sidesteps the actual problems.

 

https://onlinelibrary.wiley.com/doi/abs/10.1002/cpp.2042

Clinical Psychology & Psychotherapy

Research Article

A Novel Approach to Treating CFS and Co‐morbid Health Anxiety: A Case Study

Jo Daniels
Maria E. Loades


First published: 06 October 2016

https://doi.org/10.1002/cpp.2042


A thread has been created for the Daniels paper https://www.s4me.info/threads/a-novel-approach-to-treating-cfs-and-co‐morbid-health-anxiety-a-case-study-2016-daniels.17232/

 

Regarding Scott Simpson's tweet in post #28 here.

@Keela Too might find this interesting

 

Actually I was online at the time and saw it all play out.

Thank you though for making sure I saw it.

 

It could be a Monty Python caricature of a scientific paper.
I like the idea pretending to deliberately start out with the intention of studying just one case.

Anyone who writes like this and expects anyone else to take them seriously must be very dim.
(I hear echoing in my ears 'he thinks we are stupid' - yes, with this sort of thing I have to.)

 

You're welcome. Just wanted to be sure one of you had caught it and confirm that it might be useful.

 

The people appointed to the NICE committee shows how broken that process was.

 

ME Association commentary:

https://meassociation.org.uk/2020/10/nice-sign-announce-latest-rapid-covid-19-guideline/

NICE & SIGN announce latest rapid Covid-19 guideline will address Long Covid
October 6, 2020

NICE and the Scottish Intercollegiate Guidelines Network (SIGN) have today (5 October 2020) announced they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients.
NICE Announcement 05 October 2020

Dr Charles Shepherd, Hon. Medical Adviser, ME Association:

At this stage I know nothing more about this proposed new NICE and SIGN guideline on Post/Long-Covid, or the membership of the group that will produce it, than the information that has been provided by NICE (below).

I was however asked to brief Matt Hancock’s office 10 days ago on Post/Long-Covid and the relationship to Post-Covid fatigue syndromes and Post-Covid ME/CFS.

During the ministerial briefing I stressed that people with Post/Long-Covid urgently need a high standard of multidisciplinary management and support, especially with regard to appropriate guidance on activity management that does not involve graded exercise therapy. This needs to be easily accessed through primary care and GPs.

The Secretary of State’s office also received a copy of the current ME Association information and guidance on Post/Long-Covid Fatigue Syndromes and Post-Covid ME/CFS.

Further guidance from NICE and SIGN is expected in due course.

• Free leaflets about Covid-19, the lockdown, employment, benefits, infection prevention, vulnerable status, Post-Covid and ME/CFS management, can be found in the ME Association website shop.

Further information:

• NICE & SIGN announce latest rapid Covid-19 guideline will address Long Covid | 05 October 2020
• NICE cautions against using graded exercise therapy for patients recovering from COVID-19 | 21 July 2020
• Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome | 13 July 2020

NICE and SIGN Announcement 05 October 2020

NICE (National Institute for Health and Care Excellence) and SIGN (Scottish Intercollegiate Guidelines Network) will develop the guideline jointly with the RCGP, alongside an independent cross-specialty clinical group etc.

Full text of announcement

 

We should know soon how much damage they have caused.

 

I don't know why Shepherd thinks this:

"I stressed that people with Post/Long-Covid urgently need a high standard of multidisciplinary management and support, especially with regard to appropriate guidance on activity management that does not involve graded exercise therapy. This needs to be easily accessed through primary care and GPs."

In a UK context, 'multidisciplinary management and support' sounds like exactly what I'd want to avoid!

At the moment, there's no real evidence that long-covid patients benefit from being managed by anyone.

 

Just a question of which disciplines. Teams made up of neurologists, immunologists, virologists, rheumatologists, internists and the like are definitely good. Teams made up of psychologists, occupational therapists, CBT zealots and LP practitioners, not so much.

Thing is everyone understands that in a medical context it refers to the first one. We get the second one because ME/CFS is not considered a medical problem. What we need is to be in the right context. Where we are right now, nothing matters, all words are meaningless and can be used against us. It's the context that needs to change, in the right context this is the right approach, the right terms and goals.

Basically, it's time to medicalize the crap out of chronic illness and fund large-scale research. Everything that's been resisted and obstructed and sabotaged for decades. The context changes everything. Definitely more T-cells and less therapy. Definitely no Wessely and his ilk.

 

I think that before becoming too deeply involved Shepherd needs to establish his position vis-a vis those vociferous advocates who seek to stigmatise ME and differentiate themselves from ME patients on highly questionable grounds. If he is not careful he may find himself with strange allies. A little clarity is called for.