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Trial by Error: NICE Declines to Disclose Names of Experts

Kalliope

Senior Member
Messages
367
Location
Norway
David Tuller: The Countess of Mar has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have I. But the response to the countess indicates that the process is proceeding with a lack of full transparency.

Blog post
 

Jonathan Edwards

"Gibberish"
Messages
5,256
David Tuller: The Countess of Mar has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have I. But the response to the countess indicates that the process is proceeding with a lack of full transparency.

Blog post

It seems to be reasonably transparent. It is the same people again, if we are to believe what IAPT says.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I wonder if it's worth pursing asking the appropriate people at NICE the reason WHY it's important to have 'experts' names withheld? I'd like to know the answer to that.

I suspect it's because NICE often does have to make difficult decisions about which drugs to fund and which not.

This is such an unusual situation, though, where the crux of the issue is a highly controversial therapy. If the 'expert' panel is heavily salted with those who developed and have promoted that treatment, that is obviously unacceptable. In this instance, the names should have been public from the start.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I suspect it's because NICE often does have to make difficult decisions about which drugs to fund and which not.

This is such an unusual situation, though, where the crux of the issue is a highly controversial therapy. If the 'expert' panel is heavily salted with those who developed and have promoted that treatment, that is obviously unacceptable. In this instance, the names should have been public from the start.

All the same I'd like to have them say it out loud (so to speak). I doubt that the reasoning can be defended in the case of CBT/GET therapy.
 
Messages
13,774
Great to have Tuller continuing to explore and raise issues with the way NICE works.

I feel like the 'answer' is even more absurd when you see the question it followed:

Her Majesty’s Government who were the experts the National Institute for Health and Clinical Excellence consulted in their recent review of Clinical Guideline CG 53 for chronic fatigue syndrome and myalgic encephalomyelitis: diagnosis and management. [HL637]

“The National Institute for Health and Care Excellence (NICE) routinely consults a range of topic experts as part of its surveillance review process. NICE is currently consulting on a review proposal for its clinical guideline on the diagnosis and management of chronic fatigue syndrome and myalgic encephalomyelitis. NICE does not routinely publish the names of topic experts as they are not part of the decision making [sic] process for the surveillance review.”

How could that pass for an attempt at a real answer?

It's more of Sir Humphrey evading 'who is responsible for this?'

 

Dolphin

Senior Member
Messages
17,567
"Is it the group that originally developed the 2007 guideline? That group includes Professor Trudie Chalder, one of the key PACE investigators"

No wonder the experts are being kept hidden!
I'm not sure that is correct.

Appendix A: The Guideline Development Group
Chair: Professor Richard Baker

Head of Department, Department of Health Sciences, University of Leicester

Mr Richard Eddleston

Patient Representative, Nottingham

Mrs Ute Elliott

Patient Representative, Sheffield

Ms Tanya Harrison (resigned August 2007)

Patient Representative, Norfolk

Ms Jessica Bavinton

Physiotherapist, London

Dr Esther Crawley

Consultant Paediatrician, Bath

Dr Tony Downes

General Practitioner, North East Wales

Dr Richard Grünewald

Consultant Neurologist, Sheffield

Dr William Hamilton

General Practitioner/Researcher, Bristol

Mrs Judith Harding

Dietitian, Essex

Dr Frederick Nye

Infectious Disease Consultant Physician, Liverpool

Ms Amanda O’Donovan

Clinical Psychologist, London

Dr Alastair Santhouse

Consultant Liaison Psychiatrist, London

Dr Julia C Smedley

Consultant Occupational Health Physician, Southampton

Dr David Vickers

Consultant Paediatrician, Cambridge

Mrs Gillian Walsh

Nurse, Manchester

Ms Carol Wilson

Occupational Therapist, Falmouth

Dr Philip MD Wood

Consultant Immunologist, Leeds

Members of the GDG from the National Collaborating Centre for Primary Care (NCC-PC)
Nancy Turnbull

Chief Executive and Project Lead, NCC-PC

Ms Elizabeth Shaw

Deputy Chief Executive and Reviewer, NCC-PC

Mr Gary Britton

Health Services Research Fellow (from August 2006), NCC-PC

NCC-PC technical team
Miss Nicola Costin

Project Manager and Researcher (until June 2006), NCC-PC

Ms Sarah Dunsdon

Project Manager and Researcher (from August 2006 until February 2007), seconded to the NCC‑PC

Mr Richard Norman

Health Economist (until July 2006), NCC-PC

Ms Stefanie Kuntze

Health Economist (from December 2006), NCC-PC

Ms Yolanda Jozephs

Administrator (until August 2006), NCC-PC

Mrs Karina Ramos

Administrator (from March 2007), NCC-PC
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
David Tuller: The Countess of Mar has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have I. But the response to the countess indicates that the process is proceeding with a lack of full transparency.

I suspect it's because NICE often does have to make difficult decisions about which drugs to fund and which not.

This is such an unusual situation, though, where the crux of the issue is a highly controversial therapy. If the 'expert' panel is heavily salted with those who developed and have promoted that treatment, that is obviously unacceptable. In this instance, the names should have been public from the start.

Maybe the Countess could ask another question to find out something about the composition of the team doing the review? For example, what percentage of the team has been involved in research that has found GET or CBT to be an effective primary treatment for ME/CFS or CFS?
 

Stewart

Senior Member
Messages
291
Maybe the Countess could ask another question to find out something about the composition of the team doing the review? For example, what percentage of the team has been involved in research that has found GET or CBT to be an effective primary treatment for ME/CFS or CFS?

She could ask if any of the members of the expert group declared a conflict of interest, as required by NICE's Code of Practice, and if so how many of these CoIs were personal non-financial interests relating to the effectiveness of CBT or GET as interventions (Page 6).
 
Messages
15,786
I'm not familiar with JB but EC stands out like a sore finger.
Jessica Bavinton is a physiotherapist who helped write the PACE GET manual, from what I recall. She was involved in the NHS/Talkhealth online clinic for ME/CFS 4 years ago, where patients got to ask questions, and were basically told to shut up if they disagreed with the answers or asked for sources.

Based on her comments, she seems to be both a GET fanatic and a complete idiot. She contributed an impressive 4 false statements out of the top 10 I refuted in an article about the online clinic. For example, she confidently claims that GET results in increased activity, despite several trials showing that it doesn't, and no trials showing that it does.