Longcovid and CFS NICE guidelines

I'm not sure where to post this but want to highlight for those giving input/feedback on NICE guidelines a discussion in a BMJ Live LongCovid rehabilitation event that relates to the characterization of CFS and the NICE guidelines. The presenter was Professor Lynne Turner-Stokes of Kings College and the moderator was Trish Greenhalgh

In response to a question about the relation of CFS and LongCovid, Turner-Stokes 1) essentially boiled CFS down to fatigue associated with lack of muscle endurance and a psychological overlay and 2) seemed to imply that unlike longCovid, CFS does not have organic dysfunction that needs to be considered clinically. Greenhalgh noted that both she and Turner-Stokes were on the NICE committee for LongCovid and expected to see the COVID and CFS guidelines aligned on messaging

It's stunning that such a flawed fatigue narrative still persists at this level, especially in the face of broad evidence of dysfunction in ME across multiple systems. Particularly concerning if this is the thinking that informs the new NICE guidelines.

Moderators, please move if there's a more appropriate location for this post.

Details
BMJ Live held a session titled "Rehabilitation for the long term effects of COVID-19" as part of a three day online conference that ended Oct 17. The speaker was Professor Lynne Turner-Stokes of Kings College and the moderator was Trish Greenhalgh

The slides included the following FAQ:
View attachment 12251

[Edited to add the FAQ question and response on the slides because the image did not appear]

• Q: Is [LongCovid] the same as ME
• A: There may be some similar features as those in chronic fatigue. But it should not be regarded, or treated, as the same thing

In response to a request during Q&A to explain that FAQ, Turner-Stokes said the following:

"There may be some overlapping features in point of fact, and some people, particularly some of the [longCovid] people whose overriding symptom is fatigue may present more like somebody with what we otherwise know as CFS."

"The issue here is CFS is poorly understood anyway, the fatigue elements of COVID are also not well understood, there lots of work to be done obviously on practical things like muscle physiology but also how people are coping with it."

"Fatigue is a combination of lack of muscle strength, muscle fatigue and endurance and very often this psychological overlay that goes with that because when you can’t do the things you could because of fatigue, it is very frustrating and difficult to live with. So it’s a complicated interaction. Yes, there’s some overlap absolutely with COVID but its not necessarily the same thing and people [the longcovid patients] may have other problems, they may have underlying organic dysfunction that we need to get at."

"Similar approaches may work, by the way, things like pacing strategies, some of those cognitive behavioral" <Trish cut her off here>
​

Trish wrapped it up noting that adaptive pacing is rising and that the NICE guidelines for CFS and LongCOVID will be coming out at the same time and she expects there will be dialog between the two groups "so they don’t contradict each other and they do address the potential and indeed described overlap in a sensible and evidence based way."

 

Thanks for your post. By the way, I can't see that attachment

 

What experience, research or otherwise, does Turner stokes have with ME? I see nothing particularly relevant on researchgate. She seems to be an expert on rehabilitation, but rehabilitation from what?

 

Prof Lynne Turner--Stokes has been making claims about MUS patients, eg:

https://www.eapm.eu.com/wp-content/uploads/2018/06/EACLPP_Turner_MUS_2002.pdf

I'm worried by the people who seem quite happy with the new draft ME/CFS NICE guidelines [maybe I'm wrongly assumed that they're aware of the draft]!

 

KCL union rules apply then.

 

Shocking statements. Which new NICE guidelines are you referring to? The ones for chronic pain?

 

I guess they could be better with the talk... they're just taken from slides. But they don't inspire much confidence.

The ME/CFS ones [will edit earlier posts to clear up], seeing as they're involved in dialogue/harmonisation with Long Covid.

 

OK, though still confused as thought they weren’t out till next month?

 

@Esther12

The quote in your post #4 is absolutely appalling! Turner-Stokes is utterly delusional.

 

I assumed that they were being briefed on what was happening with the ME/CFS guidelines, given the short timeline for harmonisation and:

I could be reading too much into that.

 

Tragically @Medfeb, many of us in the UK are not at all surprised at this sort of garbage being spouted by these people.

The draft NICE GDL for ME/CFS come out on 10 Nov for 6 weeks consultation/feedback.
Most/many ME groups will be responding to NICE.

The Psych and friends' view of ME in UK is still appalling.

 

Yea, I get that. Analogy to current US national politics - I am not surprised but still stunned.

Are the draft LongCovid guidelines also being released for stakeholder comments and if so, do you know when? Trish's comments might suggest the same time frame.

 

Not sure what happened to that image. The FAQ question and response on the slides were as follows:

Q: Is it [LongCovid] the same as ME
A: There may be some similar features as those in chronic fatigue. But it should not be regarded, or treated, as the same thing​

I edited the original post to add

 

One wonders how this dialogue between the two groups is to take place. Will it be the entirety of the groups conversing or only select individuals? Is there "overlap" in te membership of the groups? I should Know, but I forget.

 

Does not the suggestion that "long Covid" may be be four different, though possibly overlapping, syndromes make that slide appear foolish.? Why would one expect potentially four syndromes to be treated in like manner, let alone in the same manner as ME?

 

I meant to post the links to the conference, which is now on demand, at least for those who registered. I don't know if you can register after the fact.

1. The slides are here
2. The on-demand video is here - click "OnDemand" on left hand side. Session is last of the day on the 16th. The CFS Covid discussion is at about minute 48:45

In the meantime, here are a few slides where "Long Covid" was described
I I

 

I thought I would highlight these views more widely:

 

How many non-specific symptoms does someone have to have before being regarded as having "Long Covid"? Is it necessary to have all of those , or only some, and if only some, are any obligatory?

 

If anyone felt inclined to upload the slides file as an attachment, that would be great. I entered in my email address at the link, but it wouldn't let me move forward.