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

After 17 years or so it's not really worth it.

 

Regardless of who the other members of the committee are, some of these members just are not fit to serve. That they were appointed makes it look like the system is committed to ignoring the problems with the way ME/CFS patients are treated.

 

I have seen comments saying that the chair and co-chair are not necessarily deciding on those appointments.

So who is? It seems to be a completely opaque system. This is not at all the way to conduct government function. Transparency is critical to ensure that the process is fair. Here the process looks to be corrupt and driven by undeclared interests.

 

Reply from NICE

 

Comment from ME Research UK

http://www.meresearch.org.uk/news/nice-me-cfs-guideline-committee-me-research-uks-comment/

 

So it’s nearly filled? Dr shepherd is not appointed ? Even if they appointed the only nurses I know with biomedical approach, either Keith from Scotland or the nurse connected to the biobank, it’s going to change things overall little.

MERUK are indicating displeasure but seem unfailingly polite, I’m not sure as David Tuller has pointed out , whether deference and decorum is a winning strategy for us.

 

As others said before, the people in charge of setting up the NICE guidelines committe don't constitute a uniform "they"

Nevertheless, there might be something like a point of view from an organizational affiliation with the Department of Health as an institution that incorporates and funds professionals treating PwME with GET and CBT and/or having done and doing research to prove that they are right proving the evidence of the efficacy of GET/CBT?

So, if those professionals should not be on the NICE Guidelines committe because they are doing flawed research and because they are harming patients, then how could it be jusified that they are in the NHS's service yet? Or the other way round: As long as they are in the NHS's service, they must act according to the NHS' prniciples. Hence, in this view, they are professionals having expertise on the treatment of PwME and it would be utterly contradictory to not have them on the committee. Same with regard to PACE researchers being clinicians.

I think, from that (alleged) point of view from those in charge of setting up the committee, the only understandable argument to accept would be that given the *scientific* controversy on PACE and related research, the committee would require to incorporate additional professionals so that clinicians/ researchers having expertise challenging the BPS aprroach would be equally represented.

The professional posts still to be filled in according to the latest update (2 nurses and 1 dietician) to me don't appear as if they could comply with this role.

Edited for clarity.

 

Just looking through the stakeholders comments which influenced jives change of heart. Given people from those groups are now on the panel it is useful to see what they think, want and plan


Liverpool didn’t want NICE updated but said


“Not until there is significant new evidence of treatment., however if it is I/we would be very keen to be involved in the new guidelines as we are one of the biggest CFS services in the UK.”


Royal college of pediatrics didn’t want the guidance updated but said


“We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.

This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.”

This we be the Crawley research I assume.

 

Comment from IiME about the process, http://www.investinme.org/IiMER-Newslet-1810-02.shtml

 

RCGP DID want it updated but for very different reasons to us


“The guideline could be improved for primary care with more focus on the mental health aspects, which are hardly mentioned. The model is very bio-medical and should be amended to give more weight to the psychological and social elements.

 The current guidance does not adequately guide the General Practitioner to consider several relatively common medical conditions which can masquerade as CFS/ME, each having chronic fatigue as a major component of their presentation. Patients suffer the double jeopardy of a generally low level of awareness of these conditions amongst the medical professions (1). If identified, each of these conditions has its own management approach, which will, understandably, differ from patients who in fact have CFS/ME. It remains important to explore and exclude other diagnoses before a diagnosis of CFS/ME is made.

 Primary care clinicians may have a difficult task in NOT increasing and commencing long- term medications of no proven value (especially of addiction) and having a high consultation rate for little therapeutic improvement.

 1.2.2.3 The tests listed need to be updated with consideration of HgbA1c or fasting glucose.

 1.6.3.1 Referral to a pain clinic in reality is likely to end up with gabapentin and narcotic prescription which are unlikely to help.

 1.6.3.3 Melatonin. Suggesting referral as not licenced may not help, as the reality is someone will then advise the GP to prescribe it. The GMC expect GPs to carefully consider any treatment that they prescribe, and expect GPs to be able to justify their decisions and actions when prescribing, administering and managing medicines regardless of whether they are licensed or unlicensed.

 Since the publication of NICE guideline CG53 10 years ago, there has been further published evidence to consider, including two MRC-funded studies (FINE and PACE):

 Chew-Graham C, Brooks J, Wearden A, Dowrick C, Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: A qualitative study. Primary Care Research and Development. October 2010. doi:10.1017/S146342361000037X.

 Wearden A, Dowrick C, Chew-Graham C, Bentall R, Morriss R, Peters S, Riste L, Richardson G, Lovell K, Dunn G. A randomised controlled trial of a nurse-led home-based self-help treatment for patients in primary care with chronic fatigue syndrome – the FINE Trial. BMJ 2010 340: c1777.

 Peters S, Wearden A, Morriss R, Dowrick C, Lovell K, Brooks J, Cahill G, Chew-Graham CA. Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of Chronic Fatigue Syndrome/Myalgic Encephalitis. BMC Imp Science 2011, 6:132.”


BACME ALSO DID WANT A REVIEW. TOO LONG A COMMENT TO COPY STATING WHAT THEY WANT TO SEE BUT WORTH A READ. ALL HERE

https://www.nice.org.uk/guidance/cg...er-consultation-comments-table-pdf-4602203536

 

So what next? Are we to accept the unacceptable or retaliate??

 

It's hard to overstate how utterly incompetent this will all look in hindsight. It will be quite a sight to behold. And with a paper trail amounting to hundreds of thousands of pleas for help over decades and thousands of testimonies of direct harm.

So reminiscent of the categorical refusal to accept the germ theory of disease and systematically apply sterilization in procedures even as patients continue to die of unexplained causes.

 

"NICE has explicitly accepted that they are accountable now for any damage to patients caused from the recommendations for CBT and GET for treating ME."

"If rumours are true that people such as such as Professor Malcolm Hooper ( a scientist with long experience of ME) have been rejected as member of that working group – presumably because they are seen as biased by NICE - then it is hard to see how NICE will or can accept others with similar “bias” - whether it be from charities or from organisation representatives with livelihoods dependent on ME."

"If NICE are trying to avoid bias then that would seem to rule out any ME charity representative (of whatever persuasion) or anyone who has vested interest in the ME world (either by career or from funding)."

"The lack of trust that exists with NICE and other areas of research and healthcare for ME is a symptom of what has occurred before."

"Two years will go by where dangerous recommendations of CBT and GET are kept, causing untold havoc.

And at the end? A lost opportunity?

What a mess!"

 

I understand your frustration, but I don't think it's fair to say the process is 'completely opaque'. NICE have a published policy on appointments to advisory committees which explains how committee appointments are made. Paragraphs 18 and 19 say:

Committee members(with the exception of lay members, see below) will be appointed after submitting a CV, a covering letter, a completed declarations of interest form and after an interview.

The appointments panel will be:

• the chair or vice chair of the committee, and either
• the centre director or nominated deputy (associate director or above), or
• a senior member of staff from the guideline developer (where applicable).

Appointments have to be confirmed by the centre director or a nominated deputy (associate director or above)​

Additionally Andrew Dillon, the Chief Executive of NICE, told us back in January that they would be exceptionally adding a lay member to the appointments panel in this case (but I don't know if this actually happened - can anyone who was interviewed confirm this?).

I assume that the centre director in this case is Dr Paul Chrisp, Director of the Centre for Guidelines (which is responsible for developing clinical guidelines). So either he - or a nominated deputy - would have a) sat alongside the chair/deputy chair (and lay member) to conduct the interviews, and b) confirmed the appointments.

I don't think the problem is that the system is opaque. I think the real issue is that the people who could be considered for positions on this committee (professionals with an expertise in ME/CFS who work in the NHS) will overwhelmingly have a BPS bias - because that's the model that the NHS has promoted and practised for the last decade. NICE's system for developing and updating guidance simply isn't designed to cope with a situation like this, where almost all the current NHS 'experts' will be biased as a consequence of the existing guidance being so badly flawed.

I think the best thing we can do now is try to identify people without a BPS bias who we think would be suitable to fill the remaining positions - community paediatric nurse, specialist adult nurse and dietician - and strongly encourage them to apply when the positions are advertised.

 

I agree the issue is the pot they’re drawing from , as they said they would. I don’t think a killer dietician with ME awareness will sway much outside their area.

“Sir Andrew Dillon, NICE chief executive, said: “The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.

“We will now recruit a guideline committee which will include people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment. As with all the guidance we produce, we will also ensure that stakeholders have the opportunity to provide evidence and insights throughout the development of the guideline.”

”

https://www.nice.org.uk/news/articl...ance-on-the-diagnosis-and-treatment-of-cfs-me

The issue is them not understanding that in this context that’s an issue.

If we accept to go along with this, and frankly the lay people chosen are free to decide their positions , The best NG can produce to please all in this fudge of totally opposing views will be a continuation of a CFS as in umbrella, a recognition that a more complex/severe ME subgroup “might exist” for whom the rehabilitation therapies may not be appropriate or effective and then a bit more medical approach eg addressing OI and POTS and severe ME care better. I don’t see how anything other than this is achievable and most of this incidentally is what BACME want, so they get to perpetuate the fatigue clinic approach with the caveat that recognition must be given to the fact that rehabilitation isn’t suitable or curative for all.

It was fascinating to see the BACME statement to NICE, linked to above because they’re basically saying what patients have said all along, that GET Might not be right for “ME” but they took us on a thirty year journey of our lives wasted to learn what we told them.

 

I disagree Barry as leopards oft don't change their spots...

 

That is why we need to focus on a few arguments that are bullet-proof. If you start arguing about what real ME is, you're losing because there are no biomarkers to prove any of what you're saying. It's just your or someone else's opinion, and the other side has opinions as well and more authority, so you automatically lose.

The strongest argument that we have is that current guidelines are based on science that is so flawed as to be worthless. We just need to hammer this point home; ask BPs proponents tough questions on why they think that the results of unblinded studies are reliable when in other branches of medicine this methodology is considered unacceptably flawed.

 

I agree that there is a lot of practical sense in the BACME statement. It is not strong on science but it comes out with some very reasonable conclusions. It may be worth remembering that a drive through takeaway Kentucky Fried CBT and GET service is as abhorrent to many of these people as it is to members here.

 

The more decent people on the committee the better, but at the same time, this is already a busted flush, and any guidelines this committee develops are going to be terrible for patients.

Also, that it seems that chair and vice chair were heavily involved with the selection of the panel it seems that we're doomed there too. We need to find a way to get NICE to recognise it's badly messed up and needs to re-start the whole process.

 

Why not have a selection panel made up of patients?