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]
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
"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.""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>
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