NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

https://www.sheffield.ac.uk/medicine/research/aupmc/staff/academicprofiles/burton

I presume that this Prof Chris Burton is the one appointed. The list of authored papers looks horrifying.

 

Some historical info on one of the NICE committee members, Dr Gabrielle Murphy.

1. "Coercion as Cure?" p 4-7:

http://www.margaretwilliams.me/2007/coercion-as-cure.pdf

2. "Magical Medicine", Appendix II, p 414-417:

http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

APPENDIX II: Response to Dr Gabrielle Murphy (Royal Free Hospital Fatigue Service)
“Coercion as Cure?” authors’ response to allegations of defamation made by Royal Free Hampstead NHS Trust concerning the Fatigue Clinic

 

It's going to be hard for the patients on the GDG to keep fighting the BS from the vested interests who will be there, who are able bodied and will be working both in the committees and behind the scenes to make sure that their viewpoint is heard.

The GDG has become, through the inclusion of the PACE sympathisers, a combative and biased area for the lay members to work in.

During the last GDG they split the committee into subgroups and I hope that this doesn't happen again as it will leave lay members in even a more exposed and hostile position.

There is going to be a limited number of meetings to work on the guideline, limited meetings and now given the members chosen, a very hard job indeed for the lay members.

If we accept that it is hard for ordinary PWME to report harms using the yellow card system it's going to be hard for the patients on the committee for exactly the same reason. Travelling to London for meetings which will last hours is going to be a huge challenge. Even doing this by link at home is hard.

 

Past committee members for contrast

Appendix A: The Guideline Development Group

Chair: Professor Richard Baker
Head of Department, Department of Health Sciences, University of Leicester

3 patients, one who resigned (in itself should be shocking)
Mr Richard Eddleston
Patient Representative, Nottingham
Mrs Ute Elliott
Patient Representative, Sheffield
Ms Tanya Harrison (resigned August 2007) Patient Representative, Norfolk

Physio
Ms Jessica Bavinton Physiotherapist, London

Paediatricians

Dr Esther Crawley
Consultant Paediatrician, Bath

2GPs and neurologist
Dr Tony Downes
General Practitioner, North East Wales
Dr Richard Grünewald Consultant Neurologist, Sheffield
Dr William Hamilton
General Practitioner/Researcher, Bristol

Dietician
Mrs Judith Harding Dietitian, Essex

Infectious disease
Dr Frederick Nye
Infectious Disease Consultant Physician, Liverpool

Psychologist
Ms Amanda O'Donovan Clinical Psychologist, London

Psychiatrist
Dr Alastair Santhouse
Consultant Liaison Psychiatrist, London

Ot
Dr Julia C Smedley
Consultant Occupational Health Physician, Southampton

Pediatricians number 2
Dr David Vickers
Consultant Paediatrician, Cambridge

Nurse
Mrs Gillian Walsh Nurse, Manchester

Ot
Ms Carol Wilson
Occupational Therapist, Falmouth

Immunologist
Dr Philip MD Wood
Consultant Immunologist, Leeds

Comparing this I can’t see how theres much more to add. If they are still looking to add a dietician that’s largely irrelevant. A nurse might bring some patient management experience. Even if they bring in dr chaudhuri as a neurologist, sort of ME friendly and dr shepherd from a professionals POV, it will still be same old with a bit more seriousness in my view.

I note here the chair was a professor Richard baker , is that the same Richard baker from all that controversial nice correspondence that was published under a FOI (just a vague memory of something) who didn’t think anything needed to change except more research ?

 

Check out @keithgeraghty’s Tweet: https://twitter.com/user/status/1056126437214904320

 

Check out @keithgeraghty’s Tweet: https://twitter.com/user/status/1056086495055015936

 

Anyone with the smarts to work with Keith please do so

 

From ForwardME meeting notes

Prof Mark Baker (from NICE) December 2017 (my formatting for read-ability)

On the Committee

"1.4 Particular care would be taken with the make-up of the independent guideline committee and the scoping stages. Committees of this kind can have two or three patient/carer members and that would be particularly important with this committee.

NICE were minded to include a lay person from the committee in the appointment of its Chair and they would probably look to Forward-ME to provide help with recruitment of lay people. Normally draft scoping is drawn up by technical experts; in this case they intended to hold a workshop first, probably in mid-January, and that would lead to the scoping exercise.

The committee would probably meet for the first time in about September or October 2018 and publication would probably be some time in 2020

1.5 The content of the current Guideline had been decided by consensus and that would probably be the case with the revised Guideline, so it was essential to get the makeup of the committee right for the new guideline.

Those formulating the Guideline would do so with an open mind and would be driven by evidence. NICE plans to give greater credence to patient views in the development of the guideline."

https://www.meassociation.org.uk/20...director-of-guidelines-nice-04-december-2017/

 

and on evidence (same source as above)

"The current NICE Guideline appeared to be based solely on published evidence and did not take account of patient and doctor evidence in the same way. Professor Baker explained that the way in which NICE gathered evidence had now fundamentally changed.

They still gave due credence to published evidence but they also paid careful attention to clinician and patient anecdote. It was the quality of evidence from whatever source that was most important. "

 

How many of the 2007 committee members had a BPS perspective? Obviously Crawley, Bavington and Santhouse do, and I'm guessing that Amanda O'Donoghue probably does as well. And I'm pretty sure that at various points I've seen Tony Downes, William Hamilton and Richard Grunewald described as believers in psychological explanations. Have I missed anybody?

 

I think nye does. I’m pretty sure most did apart from the immunologist who I think was let go to make way for a psychiatrist led CFS Service at Leeds. We have an OT from that new service this time.

 

The 2007 GDG was totally skewed in favour of the BPS view, including Doctor William Hamilton who had worked for the health insurance industry for 15 years:

A Nice Dilemma - Consideration of the known views of members of the Guideline Development Group (GDG) on p 8 - 18
http://www.margaretwilliams.me/2008/a-nice-dilemma.pdf


With the 2007 guidelines, COI of GDG memebers were issued AFTER the guidelines were published, what will happen this time round?

http://www.margaretwilliams.me/2014/uk-governments-three-pronged-strategy-for-cfsme.pdf
p 12 The finalised NICE Guideline on “CFS/ME”
"In contravention of usual practice, GDG members did not declare their competing interests until two months after the final Guideline was published. "

 

Is there any reason why Carol Carol Monaghan cant be on the committee (as she is an MP) or Mark Vink or Keith Geraghety or David Tuller or any five or six of the academics who signed the Lancet letter out of 100 or so people.

The List just goes on and on, what the hell is going on with the selection of the committee? Its impossible that it could be so heavily swayed towards the BPS side just by chance.

It already seems that NICE have written the narrative of the review willing only to invite academics/professionals who already have no interest in challenging the current evidence base.

Pathetic!

 

I think we need to make a formal complaint to NICE that the committee is heavily stacked. What do we think the BPS crowd would do if it was the other way around? Just sit there and take it? We have already seen the outcome that a spun PR stunt has had on Tovey at Cochrane via the Reuters article.

We don't need to spin anything, we just need to state the facts in black and white and demand better representation of the facts and insist on having a better balance of people, perhaps even some from other countries who have played a part in changing the CDC guidelines, the IOM, also the Dutch revision, the dropping of the Oxford definition, on and on. There's also the 30 MPs who got involved in the parliamentary hearing.

We have to make it clear that this needs to be a debate with the current guidelines proponents having to answer real questions that have now been asked in a number of medical journals about their data, methodology and the conclusions it leads to.

 

can someone who has his email address send him a link to this thread

eta: or someone on twitter

 

Notified.

 

NICE is coming across extremely poorly here.

It's reasonable to ask for a committee with no conflicts of interest or particular ideological attachment. (and by the way, being a patient is not a conflict of interest, it's the opposite, in that patients care most about actual results)

 

Fortunately NICE do specifically state:
"For the avoidance of doubt, a person living with a disease or condition relevant to the matter under discussion, or who has a family member in that position, is not seen as an interest and this does not need to be declared."

I'll let you lot tear apart discuss the rest of this document: https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf

 

https://twitter.com/user/status/1056236260501667840

 

It relied on published evidence built on outdated criteria. That's a severe twisting of evidence-based. Nevermind patient and doctor evidence. Studies performed with Oxford, Fukuda and London criteria are heterogeneous and misleading and should not serve as evidence of anything.

Oxford, Fukuda and London criteria need to be deprecated. They are unfit for purpose and provide misleading evidence. When AHRQ in the US dropped Oxford it removed all evidence for the CBT/GET fairytale. Of course it removed all studies from the psychosocial group.

This is a fight worth having. There should be no professional disagreement over the unreliability of using criteria that are so broad they create an heterogeneous patient selection. There will of course in this specific case but it will be entirely self-serving and biased because they know it's critical to maintain their stranglehold.

If there is only one positive out of this sham of a review this is one that would at least provide a stepping stone for the future. That and/or requiring actual objective evidence. Self-reported outcomes in unblinded trials are the height of amateurism and bias. It seems self-evident that objective evidence is required but apparently it's a point that needs to be specifically demanded to researchers.