UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[my bold]

And still they vehemently defend this unevidenced cr@p.

 

Think it is these..

https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-4

 

Excellent @Fainbrog, thanks.

 

erm...none, or all, in grey, other than the red ones.

which isn't to say I couldn;t work it out, just that the identifying characteristic is absent.

 

hi anniekim, the [to me potentially suspicious] quote in https://www.s4me.info/posts/386588/ should be in bacme's press statement yesterday [via tom kindlon, public].


===
From: Dr. Marc-Alexander Fluks


Source: British Association for ME/CFS (BACME)
Date : October 29, 2021
URL:
https://www.bacme.info/sites/bacme....ement NICE Guideline publication Oct 2021.pdf


The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME's response to the publication:
-------------------------------------------------------------------

BACME welcomes the new NICE Guidance on ME/CFS in the hope that this
will support continued progress in improving the quality of life of all
people who have the complex illness ME/CFS.

Clinicians working in NHS specialist ME/CFS services strive to provide
high quality care and support to people with ME/CFS while recognising
that there is still a long way to go with our understanding of the
condition and we do not yet have a robust evidence base on which to
guide treatments and therapy approaches.

The new NICE guideline provides information regarding diagnosis
including the importance of recognising the key symptom of
Post-Exertional Malaise. The guideline has also clarified the use of the
term Graded Exercise Therapy (GET) and,in a change from the previous
guideline, it has now restricted use of the term GET todescribe therapy
programmes based on treating deconditioning. The symptoms of ME/CFS are
not caused by deconditioning. This guideline marks the move away from
using GET programmes for treating ME/CFS. This is a move the majority of
BACME members working in NHS specialist services have already made.

BACME welcomes the fact the new NICE guideline specifies that clinicians
from all disciplines delivering care to people with ME/CFS should have
specialist knowledge of the condition.

BACME continues to support research which aims to provide further
understanding of the underlying pathological processes that generate the
symptoms experienced by people with ME/CFS in the hope this will also
lead to more refined therapeutic approaches.

BACME recognises the importance of providing confident support to people
with ME/CFS now and would like to see increased investment in specialist
service provision to ensure equitable access for all people with ME/CFS.

BACME will use the new NICE guideline as a foundation on which to build
further clinical guidance on the delivery of care to people with ME/CFS
and work to ensure that the patient story is heard and embedded in the
future of ME/CFS care.

--------
(c) 2021 BACME
===

 

I use the light blue background.

 

Well, if they really had all the power, NICE would have caved to their demands. Perhaps they over-estimated how much power they have.

 

Thank you @Samuel

 

I don't think the NICE Pathways document has yet been posted:

https://pathways.nice.org.uk/pathways/me-chronic-fatigue-syndrome

There's also a PDF version.

 

Another supportive doctor’s Tweet lifted from a Facebook post:

https://twitter.com/user/status/1454227429812101121


I don’t think this has already been shared, though I am getting lost in the press of information. My dreams tonight are even more bizarre than earlier when we were waiting to know when publication was happening.

 

Isn't that one definition of reality? Reality is what exists even if you do not believe in it?

 

Trish quoted from the Roundtable minutes:

So why did the discontented three* sign off on the guideline only to tender resignations on 26 July? If they weren't happy why not step down before GC sign off?

*Michael Beadsworth; Gabrielle Murphy; Joanne Bond-Kendall

 

I suspect because stepping down in advance of agreement would have called for some sort of valid explanation, as would refusing to agree. Stepping down afterwards could be done without that.

From what I have heard the chair and vice-chair were at great pains to listen to all members and respond to concerns. The three who resigned had ample opportunity to indicate why they were unhappy. Presumably it was not on the basis of issues about the evidence that would carry weight.

 

From Dr Kevin Lee
I’ve never seen statements from doctors colleges so unsympathetic, lack of recognition of patient advocacy groups, paying so little respect to evidence based findings from non-doctor stakeholders.

Actually the evidence-based findings came from the NICE staff (not stakeholders) and all sorts of other sources including doctors and non-stakeholders.