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

strategist said:
I think GET was an experiment in graded exposure therapy that sought to desensitize patients by repeatedly triggering PEM.
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Sean said:
It is why they ignored patients reporting harm, or didn't measure it properly.
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PACE GET Therapists' Manual said:
A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME
setback. This is to reduce the many negative consequences of rest, and to allow the body
to habituate to the increase in activity. If activity and exercise is reduced at this time, the
boom/bust cycle continues, and the body is not able to desensitise to the increase in
activity: which is, of course, an essential component of a graded increase in exercise and
activity.
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[my bold]

And still they vehemently defend this unevidenced cr@p.
 
List of invited organisations published by NICE on 13th October
https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-3
(ME organisations in grey to make it easier to pick out the clinician groups)

External attendees:
25% M.E. Group
Academy of Medical Royal Colleges
Action for ME
British Association for CFS/ME
Chartered Society of Physiotherapy
Forward-M.E.
#ME Action
The ME Association
ME Research UK
The ME Trust
NHS England & NHS Improvement
Royal College of General Practitioners
Royal College of Occupational Therapists
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Psychiatrists
Science for ME
Tymes Trust
_____________

List of attendees in Roundtable minutes Meeting 18th October, minutes published 29th October
https://www.nice.org.uk/guidance/ng206/documents/minutes-31
External attendees:
25% M.E. Group Helen Brownlie
Academy of Medical Royal Colleges Helen Stokes-Lampard
Action for ME David Strain
British Association for CFS/ME Vikki McKeever
Chartered Society of Physiotherapy Matthew Liston
Forward-M.E. Simon Chandlers
#ME Action Janet Sylvester
The ME Association Charles Shepherd
ME Research UK Jonathan Davies
The ME Trust Helen Winning
NHS England & NHS Improvement Celia Ingham-Clark
Rehabilitation Medicine Specialist Lynne Turner-Stokes *
Royal College of General Practitioners Martin Marshall
Royal College of Occupational Therapists Sue Pemberton
Royal College of Paediatrics and Child Health Nick Bishop
Royal College of Physicians Andrew Goddard
Royal College of Psychiatrists Adrian James
Science for ME Jonathan Edwards
Tymes Trust Nigel Speight
*not listed in advance

List of signatories of the Royal Colleges' statement
https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-12#post-386546
**Andrew Goddard, president of the Royal College of Physicians

Andrew Elder, president of the Royal College of Physicians of Edinburgh

**Martin Marshall, president of the Royal College of General Practitioners

**Adrian James, president of the Royal College of Psychiatrists

**Helen Stokes-Lampard, chair of the Academy of Medical Royal Colleges

John Etherington, president of the Faculty of Sport and Exercise Medicine, and

Steve Nimmo, president of the Faculty of Occupational Medicine

** attended the round table.
____________
 
Trish said:
List of invited organisations published by NICE on 13th October
https://www.nice.org.uk/guidance/ng206/documents/workshop-notes-3
(ME organisations in grey to make it easier to pick out the clinician groups)

External attendees:
25% M.E. Group
Academy of Medical Royal Colleges
Action for ME
British Association for CFS/ME
Chartered Society of Physiotherapy
Forward-M.E.
#ME Action
The ME Association
ME Research UK
The ME Trust
NHS England & NHS Improvement
Royal College of General Practitioners
Royal College of Occupational Therapists
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Psychiatrists
Science for ME
Tymes Trust
_____________

List of attendees in Roundtable minutes Meeting 18th October, minutes published 29th October
https://www.nice.org.uk/guidance/ng206/documents/minutes-31
External attendees:
25% M.E. Group Helen Brownlie
Academy of Medical Royal Colleges Helen Stokes-Lampard
Action for ME David Strain
British Association for CFS/ME Vikki McKeever
Chartered Society of Physiotherapy Matthew Liston
Forward-M.E. Simon Chandlers
#ME Action Janet Sylvester
The ME Association Charles Shepherd
ME Research UK Jonathan Davies
The ME Trust Helen Winning
NHS England & NHS Improvement Celia Ingham-Clark
Rehabilitation Medicine Specialist Lynne Turner-Stokes *
Royal College of General Practitioners Martin Marshall
Royal College of Occupational Therapists Sue Pemberton
Royal College of Paediatrics and Child Health Nick Bishop
Royal College of Physicians Andrew Goddard
Royal College of Psychiatrists Adrian James
Science for ME Jonathan Edwards
Tymes Trust Nigel Speight
*not listed in advance

List of signatories of the Royal Colleges' statement
https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-12#post-386546
**Andrew Goddard, president of the Royal College of Physicians

Andrew Elder, president of the Royal College of Physicians of Edinburgh

**Martin Marshall, president of the Royal College of General Practitioners

**Adrian James, president of the Royal College of Psychiatrists

**Helen Stokes-Lampard, chair of the Academy of Medical Royal Colleges

John Etherington, president of the Faculty of Sport and Exercise Medicine, and

Steve Nimmo, president of the Faculty of Occupational Medicine

** attended the round table.
____________
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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.
 
anniekim said:
@Samuel, is this BACME quote from the stakeholders comments? Many thanks.
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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
===
 
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Another supportive doctor’s Tweet lifted from a Facebook post:



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.
 
Sometimes, in order to build something better, you have to tear down the old broken rotten thing.

Bunch of snowflakes, aren't they. Way too used to getting their way, by hook or by crook, and never having to answer to reality and ethics.
Michiel Tack said:
Disappointed by the statements of the royal colleges. BACME seemed ok to work with the new guideline.

Nonetheless, I think the publication of this new guideline is an important change for the ME/CFS community. Evelien and I have written a blog post to put things in perspective. It's mostly written for people who do not know the whole background for example friends, family, and acquaintances.

A historic change for the ME/CFS community
Today, on 29 October 2021, the National Institute for Health and Care Excellence (NICE) has finally published its new guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community. This blog post tries to clarify why.

Full text: https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/
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Excellent blog, as always. Thank you. :thumbup:
Kitty said:
This is why it's puzzling that they're making such energetic efforts to make themselves look stupid in public after the event! :laugh:
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We all know the story of hubris coming before the fall. But I didn't know it could also come afterwards and keep them falling.
alex3619 said:
Where the BPS movement has excelled is at the politics. However politics not grounded in reality always leads to major problems in time. You cannot fool everyone all the time.
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And you can never fool reality any of the time.
Barry said:
And still they vehemently defend this unevidenced cr@p.
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If the last few days are anything to go by, they always will.

So they need to be removed from any influence over our care and lives. To describe them as unfit for their claimed purpose barely begins to cover it.
 
Trish quoted from the Roundtable minutes:
The recommendations were not decided on by voting, they were reached by consensus. Reaching consensus was a careful and iterative process. • The whole guideline was agreed by the committee, including the recommendations on graded exercise therapy (GET) before there were resignations
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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
 
Dx Revision Watch said:
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?
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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.
 
Trial By Error: NICE Liberates New ME/CFS Guideline After Two-Month Hijacking Nightmare By David Tuller

After much drama, the National Institute for Health and Care Excellence (NICE) has finally liberated its hijacked ME/CFS clinical guideline. As many know, in August the agency abruptly called off the planned publication of this new document, which was developed over four years. This decision occurred in the wake of fierce objections from members and allies of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades—those who now find themselves on the losing side of a paradigm shift.

[...]

It is hard to dispute the validity of many concerns raised by critics, including the tally of the damage caused by long-standing policies. Like any clinical guideline, this one is open to abuse by health care professionals who choose to ignore or misinterpret or mis-apply its recommendations. Nonetheless, as another patient noted on Facebook, the publication is a way to “bank some of the progress” that has been made in correcting the scientific narrative—and can serve as an impetus for seeking related changes in medical practice and research.
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