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

[rvallee]

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.

True. The opacity is certainly in part by brain fog making it difficult to take it all in. But it's hard to argue that it isn't highly opaque when they say one thing publicly then act the exact opposite way. Especially given some comments I have seen quoted from the RCGP that if anything, they want the guidelines to focus more, or even entirely, on a psychological model that excludes biomedical evidence.

Maybe non-responsive is more appropriate. There is some visibility but it is clear that despite the context, of strong opposition by patients stating that the guidelines are not only unfit for purpose but actually harmful, that the most important stakeholders are being shut out and that this process is unfolding with some deceit.

I still think it's 100% to go through with it, that walking out would amount to no good, but this is definitely an unfair and incompetent process so far.

 

[Amw66]

Given that differences in opinion and interpretation have been fractious in the past and a coordinated unified response is required from all ME patient / charity bodies, can a single statement be produced?

Divide and conquer may otherwise reinforce the current scenario

Where are @Russell Fleming , @Action for M.E. and @EspeMor on this?
If ever Forward ME could prove its worth it is now.

 

[Rick Sanchez]

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've been pretty vocal about this before. So most people will know my views.

But I agree completely.

In fact given what we know about the current committee, my opinion is that we should focus on just one single topic.

The topic being, is CBT and GET an appropriate treatment for ME/CFS?

We don't want even a single mention about the physical / pscyhological debate. We don't want any ''real'' ME, or using ''right'' criteria debate.

We focus exclusively on whether the scientific evidence available at the moment supports the claim that CBT and GET can treat / benefit ME/CFS patients.

When it comes to the arguments used to criticize PACE and similar studies, I also agree that we need to ignore ''weaker'' arguments. Using the correct diagnostic criteria is of course of enormous importance. Imagine a diabetes trial where they had just used people who were overweight instead of people who actually suffered from the medical condition. It would be outrageous. But... When it comes to PACE, the study is just so poorly conducted that there are just stronger arguments, and by ignoring the 'wrong dianostic criteria' argument completely we can avoid playing on ''their turf'' so to speak.

Lastly. Don't complicate the simple. What are we to gain about discussing different criteria as an argument? The results of PACE and other studies are pretty clear on the subject. It doesn't matter what criteria you employ, patients don't improve. Which means there isn't any good reason to use the argument at all, because well, we don't have to.

 

[Hoopoe]

AIDS activists supposedly impressed with their knowledge of AIDS related science. If we can demonstrate a superior grasp of science and embarass pro CBT/GET people with tough questions which they cannot answer, and our advocates all agree on the same basic message, the chances to succeed are highest.

This blinding and placebo stuff is actually basic.

 

[Cinders66]

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.

I wasn’t necessarily saying that. I’m not necessarily content either for that to be the best outcome, just ME given some special consideration in a CFS umbrella guideline that otherwise focuses on their management techniques full of online CBT and GET, and mindfulness stuff but accepting it might not be “appropriate for all”. It depends on how far these fatigue drs can also put in really good serious stuff on ME management, it’s biological basis and so on.

They will want to claim GET CBT research is great and helps lots with CFS , just not a group or two in the spectrum. Is It ethical to allow that even when applied to CFS when the PACE and fit net and Smile research has been so criticized in its own right.

 

[JemPD]

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.

This

We don't want even a single mention about the physical / pscyhological debate. We don't want any ''real'' ME, or using ''right'' criteria debate.

We focus exclusively on whether the scientific evidence available at the moment supports the claim that CBT and GET can treat / benefit ME/CFS patients.

and this.

If we could just get the rest of the charities/ME orgs to grasp this we might stand a slight chance of it not being a catastrophe. I feel like i just want to keep repeating these 2 posts, over & over ad infinitum.

"The strongest argument that we have is that current guidelines are based on science that is so flawed as to be worthless."

If only we could just stick to that <sigh>

 

[anniekim]

We don't want any ''real'' ME, or using ''right'' criteria debate.

Apologies too sick to read posts of last few pages, just quick reminder deciding on a definition is part of the scoping document - although of course agree “the strongest argument that we have is that current guidelines are based on science that is so flawed as to be worthless.”

 

[Rick Sanchez]

Apologies too sick to read posts of last few pages, just quick reminder deciding on a definition is part of the scoping document.

Thanks Annie

 

[Barry]

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

I just meant if it was going to be replied to, then something much less than 17 years would have seemed sensible.

 

[obeat]

This


and this.

If we could just get the rest of the charities/ME orgs to grasp this we might stand a slight chance of it not being a catastrophe. I feel like i just want to keep repeating these 2 posts, over & over ad infinitum.

"The strongest argument that we have is that current guidelines are based on science that is so flawed as to be worthless."

If only we could just stick to that <sigh>

I completely agree. During ME awareness week, a report published by the BBC had a quote from an unnamed GET expert that " it was safe and useful for SOME". Was that an admission that it doesnt work as well as they claim ? Maybe a less rigid one size fits all is possible. I would prefer that GPs adopted a very cautious " wait and see " approach to care because we don't know how each person's illness will progress.

 

[EspeMor]

Given that differences in opinion and interpretation have been fractious in the past and a coordinated unified response is required from all ME patient / charity bodies, can a single statement be produced?

Divide and conquer may otherwise reinforce the current scenario

Where are @Russell Fleming , @Action for M.E. and @EspeMor on this?
If ever Forward ME could prove its worth it is now.

#MEAction is currently working flat out on how to address this, from all possible angles. So we are here

 

[chicaguapa]

Where is the U.K M.E Action PR person? @chicaguapa......sorry can't remember her name.

Sorry, I've only just seen this. I didn't apply to be on the committee. I deliberated for a long time but decided not to because I was very much put off by having my name personally and publicly attached to the review and the weight of pressure and expectation from the M.E community. I have enormous respect for the lay members and professionals for stepping up and putting themselves in the firing line.

 

[Sly Saint]

According to the current NICE guidelines re setting up the 2007 version:

"The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification.

Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME."

It would be interesting to know who the 'others' were(?)

Is this (ie recognition of ME/CFS as neurological until/unless future biomedical research proves otherwise) something that should be a pre-requisite in the new guidelines?

If so, then surely they should filter out those committee members who profoundly disagree?

As for the "risked restricting research into the causes, mechanisms and future treatments for CFS/ME."
bit, the framing of ME as a BPS/psychogenic disorder has done that very successfully.

 

[NelliePledge]

Given that differences in opinion and interpretation have been fractious in the past and a coordinated unified response is required from all ME patient / charity bodies, can a single statement be produced?

Divide and conquer may otherwise reinforce the current scenario

Where are @Russell Fleming , @Action for M.E. and @EspeMor on this?
If ever Forward ME could prove its worth it is now.

As we’d not heard from him I contacted Russell through MEA Facebook which is his job. He doesn’t get onto S4ME these days as his time is spent on work/rest. I keep meaning to email MEA comms guy who was appointed last year to suggest he joins or gives it as a role to one of his team.

 

[Suffolkres]

This was quite powerful I feel ....... http://www.pulsetoday.co.uk/views/letters/what-i-learned-about-chronic-fatigue-syndrome-from-my-research-project/20032262.article
What I learned about chronic fatigue syndrome from my research project
15 July 2016

Letter from Emma Davies, a medical student at Brighton and Sussex medical school

• 

For my fourth year medical school research project, I reviewed the process of assessment and diagnosis of CFS/ME within primary and secondary care.

It raised some interesting questions about the issues of diagnosing these disorders in primary care and how GPs can help these patients even with limited time and resources.

The diagnosis of CFS or ME relies on extensive history-taking and recognition of a characteristic pattern of symptoms. Four hallmark features are: post-exertional malaise, (‘payback’ where intense, prolonged exhaustion occurs after activities which used to be normal for the patient), cognitive difficulties (‘brain fog’), sleep disturbance and chronic pain.

The distinction between chronic fatigue and CFS/ME can be hard to establish in a ten-minute GP appointment.

!!!! NICE guidance includes the dreaded phrase that GPs are ‘well placed’ to provide early assessment and diagnosis for patients.

However, my placement in a specialist CFS/ME centre highlighted the intensive evaluation of patients that takes place there and therefore the challenges of making a definitive diagnosis in primary care.

 

[Russell Fleming]

Greetings and apologies for absence, but as Nellie has said above, it's proving very hard balancing work and the demands of M.E.

Dr Shepherd has been adding what comments he can to several threads on our Facebook page.

I am afraid that until we have exhausted negotiations, sorted out whether he will actually be on the guideline committee, and discussed any action with other members of Forward ME; we won't be issuing a formal statement.

Comment from Dr Shepherd yesterday:

"NICE is now well aware of all the very negative reactions from the ME patient community to some of the appointments to the professional committee that have been announced.

"They are also aware of the information that has been published on the internet regarding some of these appointments.

"There is a lot going on ‘behind the scenes’ at the moment regarding the composition of the new guideline committee and I would caution against any sort of action which could turn out to be counter-productive."

Comment from earlier this morning:

"I know how angry people are feeling at the moment and I spent a considerable part of yesterday speaking with colleagues and dealing with issues relating to the NICE guideline and the make up of the committee.

"As I have already stated, NICE are well aware of the anger and concern that is being expressed by the patient community in relation to the overall composition of the guideline committee."

"So I can assure you that things are happening ‘behind the scenes' and I hope you will appreciate that as my own position is also under discussion I cannot start making public comments about the composition of guideline development group at the moment."

Thanks.

 

[Cinders66]

If the BACME representatives are going to argue CBT for CFS is fab for some, reasonably good for others and not helpful for a third and themselves are saying those who meet more “ME type criteria” are more severe complex and difficult to treat with behavioral interventions, is our community going to accept that ? People saying ME and CFS can’t currently be distinguished, what about PEM and criteria? Oxford CFS vs ICC ME and the difference in prevalence, treatment success, presentation of those groups. ### Btw dividing the CFS treatability into three types of responders was exactly was Wesseley was saying 2008.

They don’t want criteria change they say, so does that mean NICE, FUKUda and Oxford will remain as main uk CFS criteria, are we going to be happy with that?

Are we going to accept a broad UK CFS fatigue guideline with the bit relevant to us along the lines of caveats that some more complex severe patients might not be suitable or applied to by this. Can they create a guideline that accommodates and serves their very broad NICE CFS with our Global ME/CFS or ME?

Is a move away from GET for all and more OI testing etc all we are aiming for whilst the status quo might largely remain

If bacme are recognizing the ME subgroup (and by that I mean people with more than the fatigue plus one as Esther Crawley called NICE CFS) are we benefited at all by keeping under their UK CFS umbrella that’s obscured and suffocated us for decades? Do we think we can be well served in a CFS spectrum guideline.

 

[JemPD]

Do we think we can be well served in a CFS spectrum guideline.

no.

and the worst of it is that some people who are not yet severe, will continue to be MADE severe by GET & then magically get shoved into the 'ignore' group. I mean frankly i'd like to be in an 'ignore & leave to rot' group if the only alternative is a 'coerce or section to enable torture' group, but that still doesnt help those who are haplessly trusting their Drs when told "exercise cant possibly do you any harm & ending up in the ignore/coerce or section group because of it.

 

[Cinders66]

AFME update

Updated Comment:
30/10/208

Thank you for your comments. Our Head of Communications and Engagement, Clare Ogden, says: “I understand the concerns expressed here – and absolutely share them – about the urgent need for the guideline development committee to produce a guideline shaped by the experiences of people with M.E., one that offers unmistakable clarity about the potential harm caused by behavioural treatments for M.E.

“As we made clear in our response to the NICE guideline scope consultation, Action for M.E. would not accept recommendations of any approach based on the deconditioning hypothesis, the notion of false illness beliefs, or in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored.

“So far, the Chair and/or Vice Chair have recruited ten professional committee members, and five lay members (ie. people with lived experience of M.E.). Clearly there is some anger about the majority of the professional appointments, and a lack of trust (which is entirely unsurprising given the lack of progress in the field) in the process, and specifically in some of these individuals.

“While entirely understandable, given issues with the PACE trial and the unhelpful responses from scientists involved in, I do not think it is realistic to accurately judge anyone’s commitment to upholding the Nolan principles (to which all committee members are required to adhere) based solely on selected information found online, anecdotal accounts, and their apparent working relationships with other professionals.

“Instead, I think it would be helpful to understand more about the current views and recent experiences of every committee appointment, and their relationship with people living with M.E. My team and I will be contacting them to ask if they would be willing to share this with us – and you, via our website and social media channels.”



“I also want to make it very clear to the five lay members of the Committee – Saran Bonser, Sally Burch, Nicola Kidby, Adam Lowe and Dorinda Jack – that we believe your voices, and your experience, to be a crucial and powerful part of this review. Having attended the two NICE workshops on the guideline so far, and having been in touch with the technical team to share feedback from people with M.E. about the recruitment process, I believe the committee’s Chair and Vice Chair are sincere in their determination to produce a guideline that is fit for purpose, and patient-led.”

 

[JemPD]

oh for goodness sake! AFME in fantasy land again. no energy & too foggy to explain why committee members telling us their 'current views & relationship with PwME' will be useless & misleading.......
Disingenuous being the BPSers middle name, i'd have thought it flippin obvious!