NICE guidelines: topic experts and the behind the scenes

Some revelations about shenanigans at NICE

- the IAPT team is in charge of the NICE guidelines for ME/CFS - as flagged up by Hope 4 Fibro & ME Northern Ireland - back in 2017!!!
According to the IAPT webpage it's still listing the "CFS/ME" guideline as under their control - that's the psychologists and psychiatrists in control AGAIN

- the IAPT team commissioned the National Collaborating Centre for Primary Care (NCC-PC) to do the guideline research and development - NCC-PC is run by the Royal College of GPs. Who are the main group whining about the fact the existing guidelines barely mention mental health.
"Topic experts" from this group are the ones who already filtered out everything biomedical, everything international and included PACE, FINE, FITNET-NHS and everything else that used the Oxford criteria.

- There is a National Collaborating Centre for Chronic Conditions -
our guidelines *should* be developed by them. They also cover neurology. They are organized by the Royal College of Physicans not the Royal College of GPs.

Who can we raise this abuse of process to?

NICE haven't just chosen crap evidence and inappropriate guideline members - they've also set out with a pro-CBT agenda. Totally unacceptable.

Who are NICE accountable to?
Any contact with the new director now Mark Baker has moved on?
NHS England?

 

You might want to first read some of the threads on the NICE guidelines review that are here on S4ME.

https://www.s4me.info/threads/s4me-letter-to-nice-concerning-chris-burton.7774/#post-137160

https://www.s4me.info/threads/complaint-about-process-of-nice-review-of-me-cfs-guidelines.7674/

https://www.s4me.info/threads/nice-guidelines-update.7138/#post-127995

 

GPs are basically deciding what goes on in the secondary specialist clinics, bizarre!

The info they came up with from the last review -
https://www.york.ac.uk/media/crd/crdreport35_summ.pdf
This update was funded by the National Institute for Health and Clinical Excellence who have commissioned the National Collaborating Centre for Primary Care (part of the Royal College of General Practitioners) to produce guidelines for 'The Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis(or Encephalopathy) in Adults and Children'. The update was commissioned to support the development of these guidelines. The views expressed in this publication are those of the authors and not necessarily those of the NCC-PC, RCGP or NICE.
The full version of the original review and this update can be downloaded free of charge from the CRD website (www.york.ac.uk/inst/crd). For information about how to obtain paper copies of both of these reports, contact the CRD publications office at: crd-pub@york.ac.uk.

 

names of those involved last time
https://www.ncbi.nlm.nih.gov/books/NBK53585/

the Consensus Expert Rosalind Raine had a 2002 paper in which she referred to CFS as one of the most common somatic syndromes...

 

Do you have a link to this please?

 

The Guideline committee was organised through the College of Physicians. They are the people I interacted with in discussing my potential place on the committee.

 

The update on the link is 2006.

 

It is actually quite interesting to see that in 2006 they explained their basis of judging evidence. It makes clear just how naive and unrigorous they were.

 

Yep, it's the RCP hosting this, not the RCGP.

 

Published online March 2005:

Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome:

Conclusion
CFS patients were able to increase their daily physical activity for a period of four weeks. In contrast to previous studies fatigue, muscle pain, and overall mood did not improve with increased activity. Increased activity was not presented as a treatment which may account for the differential findings between this and previous studies. The results suggest that a daily "activity limit" may exist in this population.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC555551/

 

that's a relief about the RCP - does this mean the national coordinating centre is the chronic conditions one?

Also is the IAPT still in charge of commissioning the guidelines? If I understand it right that means they get influence over the scope?

The link from York is the evidence used to justify GET & CBT treatments which evidence was rated highest for the last guidelines research. While there will be a new evidence search these trials and reviews will no doubt still be included.

So finding evidence against those specific trials / reviews is key - rather than only relying on only newer findings.

Top GET evidence:
Fulcher & White 1997 link
Wearden 1998 link (Oxford criteria)
Powell 2004 link (Oxford criteria)
Powell 2001 link (Oxford criteria without bedbound or wheelchair users)


Top CBT evidence:
Deale 1997 link
Prins 2001 link group CBT - can't understand the findings

Anyone know of commentary, criticisms, letters or objections from charities about these trials?

 

I think you are thinking out of time frame @daftasabrush.

These studies will get looked at but things have moved on and there is no reason why these old studies, assessed before, would have any more importance than more recent ones in a new evaluation.

As far as I am aware IAPT has nothing to do with the current guideline process. Everything is being looked at again from scratch. That was the whole point of the lobbying to get a review - to start afresh because it was accepted that what had gone before was problematic.

There are papers critiquing these trials. There is also the recent Cochrane review which gives useful information about trial deficiencies, despite coming to the wrong conclusion. Cochrane themselves have admitted that the review is no good so the conclusions can be ignored.

 

https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt
Hope 4 ME & Fibro Northern Ireland raised this in 2017 in the 10 year so report. That's where I got the link from.
The new guidelines have been caked Myalgic Encephalomyelitis / Chronic Fatigue Syndrome but I can't tell if they have been moved under another group or not.

10 year surveillance stakeholder comments from 2017 - page 146 (!) - NICE do not deny IAPT did the commissioning.
https://www.nice.org.uk/guidance/cg...er-consultation-comments-table-pdf-4602203536

 

Is it possible to find out for sure who is commissioning the guidelines - if it's not IAPT then who?

Do you know which National Collaborating Centre has the commission? I'm guessing now from what you said that is the Chronic Conditions one.

Info from 2007 shows who was being the scenes, there were just two researchers from York (CRD) and two "experts" - Rosalind Raine being the one who previously called CFS "somatic". She's still employed there.
There's only 53 staff at the York centre. From reading the initial decision to not update and the new notice too it sounds like those doing this research have not understood the importance of separating CFS from chronic fatigue.
I think we are dealing with the same researchers and "experts" as before, and they either don't know the field of simply continue a pre-set agenda. If this is true then we need to insist on change or charities need the opportunity to educate them on ME vs CFS vs fatigue of unknown cause

2007 -
National Collaborating Centre for Primary Care (NCC-PC)
Methods team
Miss Nicola Costin: project manager and researcher
Ms Sarah Dunsdon: project manager and researcher
Mr Gary Britton: project manager associate and researcher
Mr Richard Norman: health economist
Ms Stefanie Kuntze: health economist
Ms Elizabeth Shaw: Deputy Chief Executive and researcher
Ms Nancy Turnbull: Chief Executive and Project Lead
Ms Yolanda Jozephs: administrator
Mrs Karina Ramos: administrator

Centre for Reviews and Dissemination, University of York
Dr Carol Forbes: systematic review project manager
Ms Anne-Marie Bagnall: reviewer

Consensus development expertise
Prof Rosalind Raine: professor of Health Services Research, University College London (previously, based at the London School of Hygiene and Tropical Medicine)

Mr Andrew Hutchings: lecturer in Health Services Research, London School of Hygiene and Tropical Medicine

 

NICE is commissioning the research through the Royal College of Physicians. NICE itself produces the guidelines after a decision by the committee. As far as I can see the people doing the research are completely new and we met some of them at the scoping meeting. The whole process is being very closely managed by the committee chairman, Peter Barry, who in my view is very switched on and absolutely nothing to do with anyone involved before. He made it clear at scoping that because of the previous problems the procedure would be much more open to calls to review extra material rather than just what comes up on a trawl by the 'techies'.

The committee will be a mix of people involved in ME service provision - some being psychologists and physiotherapists and some physicians, with a spectrum of views - and lay members, some of which are members here. I have been asked to act as expert witness. There is likely to be considerable debate about the content of the guidelines and I rather suspect that whatever the commissioned team of techies comes up with will get buried in the process - since however varied their views most of the people of the committee will understand the significance of the material much better than those supposed to summarise it.

 

The page links to a list of NICE guidelines for conditions that are managed under the IAPT programme, including 'CFS/ME'. Nothing suggests to me from this that the NICE ME/CFS guideline review is connected in any official sense to IAPT.

 

It looks as if there are two different processes occurring through or under NICE. The update of the ME Guideline and a separate process for the IAPT

https://www.nice.org.uk/Media/Default/About/what-we-do/NICE-advice/IAPT/IAPT-FAQ.pdf

Date at the bottom 2018

"The NICE expert IAPT panel discussed and agreed that the following conditions are those managed in IAPT services:

• Depression
• Generalized Anxiety Disorder
• Social Anxiety Disorder
• Panic Disorder
• Agoraphobia
• Post-Traumatic Stress Disorder
• Health Anxiety (hypochondriasis)
• Specific Phobia
• Obsessive-Compulsive Disorder
• Body Dysmorphic Disorder
• Irritable Bowel Syndrome
• Chronic Fatigue Syndrome
• Medically Unexplained Symptoms not otherwise specified

and

What NICE guidance relate to conditions managed by IAPT services?

• Common mental health problems: identification and pathways to care (CG123)
• Depression in adults: recognition and management (CG90)
• Depression in adults with a chronic physical health problem: recognition and management (CG91)
• Generalised anxiety disorder and panic disorder in adults: management (CG113)
• Obsessive-compulsive disorder and body dysmorphic disorder: treatment (CG31)
• Post-traumatic stress disorder: management (CG26)
• Social anxiety disorder: recognition,assessment and treatment (CG159)
• Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (CG53)
• Irritable bowel syndrome in adults: diagnosis and management (CG61)
• Antenatal and postnatal mental health: clinical management and service guidance (CG192)
"

 

That's what I thought.

Jonathan - I've read up on who is on their panel and read the research I could find. Alan Stanton is especially alarmingly (ban discharge against medical advice forms for kids, how to force treatment on under 18s who are Gillick competent while displacing parents rights) . I've also read the full stakeholder comments.

Below is part of what I'm working from in trying to identify who does what behind the scenes and who has control over what. The idea that the GDG is in overall control is wrong - Peter Barry & Ilora Finlay had "advice" from people unknown about who to appoint or reject for the GDG.
Invest in ME also have mentioned the secret meetings.
The Countess of Mar had her FOIA request for names of experts denied too. link

https://www.nice.org.uk/process/pmg...volved-in-developing-nice-clinical-guidelines

When the Department of Health or the NHS Commissioning Board asks NICE to produce a clinical guideline on a particular topic, we commission one of the NCCs or the Internal Clinical Guidelines Programme to coordinate the guideline's development.
...
The guidelines team in the Centre for Clinical Practice at NICE supports and advises the NCC throughout the guideline's development. Each guideline has a Guidelines Commissioning Manager, as well as a Centre for Clinical Practice lead....
Developing NICE standard clinical guidelines involves:

• NICE
• National Collaborating Centres (NCCs)
• Guideline Development Groups (GDGs)
• the Patient and Public Involvement Programme (PPIP) at NICE
• expert reviewers
• stakeholders.

....
Role of the NCC

For each clinical guideline, the NCC:

prepares the draft scope and refines it in response to comments received during consultation

establishes and works with the GDG to develop the clinical guideline

undertakes systematic reviews of the literature and health economics analyses

ensures that the processes described in The guidelines manual are followed, and documents this

together with the GDG, prepares the consultation draft of the guideline

together with the GDG, makes changes to the guideline in response to comments received from stakeholders during consultation

publishes the final full clinical guideline

advises NICE on publishing, disseminating, implementing and updating the guideline.

 

It is certainly interesting to see that IAPT seem to have a separate review going on under NICE. However, it looks as if IAPT will be expected to follow the guidance for the specific conditions - which for ME will be set by the GDG. I can see that there is another layer to keep tabs on though.

Yes, it looks very much as if early on Peter Barry was constrained in who he could appoint. I have no idea who was involved but it is very likely that there were back channels...
We expected as much. But then most of the people who were initially turned down (at least three) were offered places and I was offered to act as expert witness, having initially been told that it looked as if my involvement was against the rules. I have had personal email exchange with Barry and my impression has been that he IS running things and has managed to put together what may be a very useful mix of people. If everyone involved in CBT and GEThad been banned from the committee it would have been very easy for others to cry foul.

I think it is reasonable for advisors names not to be made public.

I am aware of the description of the procedure. And there is no doubt that NICE has traditionally been a bureaucratic set up that often gets things wrong by following recipes badly. But it is obvious that the point of the GDG is to evaluate the recipe-following of the commissioned techies and to knock it into sensible shape - or to make sure it makes sense. If that was not their role there would be such a committee.

There are several people on the GDG who have very clear ideas on what that has to involve. It has to involve genuinely rigorous analysis of evidence. I do not disagree that there may be a huge battle at the GDG coming to any sort of consensus. However, I actually think that whatever they are presented with initially is pretty irrelevant since whichever viewpoint the GDG members take they will have a strong position on the scope of evidence already.

Moreover, I cannot see any better way forward than what is happening now. If there are secret powers behind the scenes then there is nothing anyone can do about that that I can see. The way things are set up those that are unhappy with the status quo will be in a position to point that out and to argue for a change. If in the event there is no change then the detailed arguments involved will be documented and public. There will be no opportunity for people to hide behind claims that objectors to the status quo are simply malicious activists. The responses to objections will be documented. They will be available for a Parliamentary Select Committee to raise with the government officer for standards in science.

In other words the democratic process will be able to achieve what it can achieve. The alternative is for those who shout loudest, or whisper most persuasively in private, to win, and that is the situation we already seem to have.

 

Just to be clear, this was about a review of the previous guideline. It seems unrelated to the current proces of writing a new guidelines.

Do we have formal evidence of this, or is it just the impression of people close to the developments?