NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Hilda Bastian said:
I will be looking at the methods and evidence related only to the subject Cochrane is reviewing. I'm not going to check the numbers in their GRADE tables, for example, and I'm not going to try to reproduce their analyses of qualitative or other research. My focus is on the quality of the Cochrane review and supporting stakeholder engagement in the process.
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Think this might be worth noting here especially in relation to what is going on within NICE? ?


'Awareness of the FOI response has got me looking at minutes of Guideline Committee [GC] meetings subsequent to the consultation on the draft.

It takes time to download and find the record of what went on at these. Which can be summed up in a single page - attached.

Key messages:
* the first meeting subsequent to the consultation period took place on March 1st.
at this meeting guideline lead Kate Kelley presented the GC with “an overview of stakeholder comments" - it is unclear whether or not the GC actually get to see the comments, or have to proceed solely on the basis of "an overview” produced by NICE
all other items begin “The committee reviewed and discussed stakeholder comments and recommendations on ….” with the following exception …
… at the meeting of 8th of March, having "reviewed and discussed stakeholder comments and recommendations on CBT”: “The committee amended recommendations on CBT”.

* the issue of “indirectness in GRADE ratings” was discussed on 5th March; there is no record of the decision to seek further papers etc., as revealed in the e-mails shared following FOI; this could mean that it wasn’t a GC decision, but taken by NICE - albeit recording that the GC were informed of this would have been appropriate (assuming that they were made aware).

The most recent meeting for which a minute has been posted on the website is 22nd March. Next meeting was scheduled for 19th April, two and a half weeks ago now.

Hope this is helpful.

PERMISSION TO SHARE

BW, H"
 

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Suffolkres said:
Think this might be worth noting here especially in relation to what is going on within NICE? ?


'Awareness of the FOI response has got me looking at minutes of Guideline Committee [GC] meetings subsequent to the consultation on the draft.

It takes time to download and find the record of what went on at these. Which can be summed up in a single page - attached.

Key messages:
* the first meeting subsequent to the consultation period took place on March 1st.
at this meeting guideline lead Kate Kelley presented the GC with “an overview of stakeholder comments" - it is unclear whether or not the GC actually get to see the comments, or have to proceed solely on the basis of "an overview” produced by NICE
all other items begin “The committee reviewed and discussed stakeholder comments and recommendations on ….” with the following exception …
… at the meeting of 8th of March, having "reviewed and discussed stakeholder comments and recommendations on CBT”: “The committee amended recommendations on CBT”.

* the issue of “indirectness in GRADE ratings” was discussed on 5th March; there is no record of the decision to seek further papers etc., as revealed in the e-mails shared following FOI; this could mean that it wasn’t a GC decision, but taken by NICE - albeit recording that the GC were informed of this would have been appropriate (assuming that they were made aware).

The most recent meeting for which a minute has been posted on the website is 22nd March. Next meeting was scheduled for 19th April, two and a half weeks ago now.

Hope this is helpful.

PERMISSION TO SHARE

BW, H"
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https://www.bmj.com/content/371/bmj.m4774/rapid-responses

'.......This equates to 20 million, a deeply disquieting number of people for whom there are ‘no objective diagnostic tests . . . no curative treatment’ and for whom the primary goals of treatment are to give patients techniques for husbanding what little energy they possess. Their lives are limited and drab, and can scarcely be called more than existence......."

......well said!
 
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Copied post
They sent a letter to NICE in connection with the guidelines. The text of the Facebook post:

Please note. Important. Email letter from 25% ME Group https://25megroup.org/memberships. I’ve been given permission to share.
(and other stakeholders - see bottom of the email) to NICE

From: 25% Me Group Enquiry <enquiry@25megroup.org>
Sent: 07 June 2021 17:02
To: cfsme@nice.org <cfsme@nice.org>
Subject: ME/CFS Guideline in Development [NG10091]

Dear NICE

In view of the further evidence being obtained in respect of this guideline in development and further analysis consequent on same, we consider it appropriate that there should be a further opportunity for stakeholders to comment on any revisions to the draft guideline that may result. We are therefore requesting that a draft be circulated for comment should changes result from this further consideration of evidence.

This request is being lodged on behalf of the following eight stakeholder organisations:

The 25% ME Group enquiry@25megroup.org
Blue Ribbon for the Awareness of ME (BRAME) brameinfo@yahoo.co.uk
Invest in ME Research info@investinme.org
LocalME
ME-Letterforce
reMEmber - The Chronic Fatigue Society me_cfs@hotmail.com
The Young ME Sufferers (TYMES) Trust https://www.tymestrust.org/contactus.htm
Welsh Association of ME & CFS Support (WAMES) mailto:enquiries@wames.org.uk

regards,
Simon Lawrence
chairperson

The 25% ME Group

(I don’t know why it shows Tymes Trust below and not 25% ME Group, but Tymes Trust were a signatory
- Jan)
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"Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community."

https://doctorswith.me/dwme-joins-call-for-nice-to-maintain-scientific-process/

Translation: A number of ME groups who are stakeholders in the NICE guideline process have sent NICE a letter calling for a further consultation period "to comment on any revisions to the draft guideline that may result [from the additional review of evidence taking place at the moment].". Doctors for ME are one of those groups.
 
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Dx Revision Watch said:
I don't see Doctors with ME listed as a Stakeholder.
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The letter says it is lodged on behalf of the eight stakeholders listed. 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' is the ninth entry on that list.

This request is being lodged on behalf of the following eight stakeholder organisations:

The 25% ME Group | Blue Ribbon for the Awareness of ME (BRAME) | Invest in ME Research | LocalME | ME-Letterforce | reMEmber – The Chronic Fatigue Society | The Young ME Sufferers (TYMES) Trust | Welsh Association of ME & CFS Support (WAMES) | Dr HNG Group Submission, with and on behalf of Doctors with M.E.
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Dx Revision Watch said:
I don't have a copy of the previous Stakeholder list to compare with the 08 July 2021 version for additions to this list.
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There's a copy of an older version on archive.org. Comparing the two, the following entries have been deleted:
Healthwatch Trafford
Moving Minds Ltd
National Institute for Health and Care Excellence
Oxfordshire CCG
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and these have been added:
Addvention Consultancy Ltd
Bradford District Achievement Partnership
British Acupuncture Council
British Neuropsychiatry Association
Christopher Lane Trust
Connect Health
East Sussex Healthcare NHS Trust
Epsom & St Helier University Hospitals NHS Trust
Faculty of Occupational Medicine
Faculty of Sport and Exercise Medicine
Herefordshire and Worcestershire CCG
Hypermobility Syndromes Association
InHealth pain management
International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
Longcroft clinic
Manchester Foundation NHS Trust
Maternal & Fertility Nutrition Group of the BDA
ME Advocacy UK
ME International
ME/CFS Parents
National Council for Osteopathic Research
Newcastle upon Tyne Hospitals NHS Foundation Trust
NHS England and NHS Improvement - Patient Safety Team
NHS Grampian (Aberdeen Infirmary)
NHS North Central London CCG
North Bristol NHS Trust
North Cumbria Integrated Care NHS FT
Physiotherapy Pain Association
Plumstead Community Law Centre
Register of Lightning Process Practitioners
Royal College of Physicians and Surgeons of Glasgow
Sheffield ME and Fibromyalgia Group
Surrey and Sussex Healthcare NHS Trust
The B12 Society
The Brain Charity
The Grace Charity for M.E.
The Institute of Osteopathy
University College London Hospitals NHS Foundation Trust
University of Plymouth
Voices of Recovery
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Trish said:
It looks to me like the NICE stakeholder system is badly broken. Some of those organisations should not be allowed to waste the time of NICE committees as they have vested financial interests in their quack therapies being taken seriously.
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But for arguments sake, what if they were able to bring an effective therapy to the attention of NICE that otherwise they wouldn't consider (for whatever reason)? And if they try to bring ineffective therapies up before NICE, then the evidence assessment 'should' discover the ineffectiveness. I understand, and sympathise with, your argument, but I'm not sure how else it could be done.
 
Trish said:
It looks to me like the NICE stakeholder system is badly broken. Some of those organisations should not be allowed to waste the time of NICE committees as they have vested financial interests in their quack therapies being taken seriously.
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That's one of the things I frankly don't understand here. Most of the organizations have absolutely no stake in this, it doesn't concern them one bit.

But then again there are many things that are beyond understanding in how this is happening...
 
I'm confused. I thought the cut-off date for further stakeholder input to the guideline process, and commenting on the draft, had long passed. I though all that remained was for NICE to consider the feedback on the latest draft that had been received up to that deadline, and no other. I thought this was a key reason put forward as to why the BPS brigade's efforts to unravel that draft would amount to nothing, because anything attempted after that deadline would be inadmissible.

I've not been following this thread all that closely just recently, so I'm presumably missing something.
 
Dr Hng made a submission on behalf of several individuals during the draft guideline consultation period (I infer the same group is what is referred to by 'Dr Hng Group Submission' in this letter). Presumably as a group that doesn't constitute an organisation or charity, they wouldn't have qualified for stakeholdership.

It appears Doctors with ME are attaching to this submission group for the purposes of this letter (presumably due to Dr Hng's involvement in Doctors with ME), and doesn't seem to suggest that Doctors with ME have stakeholdership. Particularly as they aren't currently on NICE's list of stakeholders. Unless they have registered recently.

The Dr Hng group submission was posted to the forum here: https://www.s4me.info/threads/nice-...consultation-december-2020.18352/#post-318561

This is what we have submitted to NICE. We have 21 signatures! Including:
Dr. Nina Muirhead
Dr. Nigel Speight
Dr. Jonathan Kerr
Prof. Malcolm Hooper
Dr. Sarah Myhill
Dr. Karl Morten
Natalie Boulton
Millions Missing France
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Barry said:
I'm confused. I thought the cut-off date for further stakeholder input to the guideline process, and commenting on the draft, had long passed. I though all that remained was for NICE to consider the feedback on the latest draft that had been received up to that deadline, and no other. I thought this was a key reason put forward as to why the BPS brigade's efforts to unravel that draft would amount to nothing, because anything attempted after that deadline would be inadmissible.

I've not been following this thread all that closely just recently, so I'm presumably missing something.
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I'm totally confused as well. Is there going to be yet another delay?!
 
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