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

[Hoopoe]

If I ask myself whether they are playing the evidence or power game, it's clear they're playing the power game. They subvert or circumvent or just ignore the structures and rules in place that are meant to ensure reliable evidence. They don't seriously debate evidence with critics and like to respond to criticism with smear campaigns.

Their illness model has patient gaslighting built into it ("patients not reliable witness of their own condition").

So if this attempt by patients to make progress by debating the evidence fails despite heroic efforts, it will demonstrate to me that evidence doesn't matter in science, but rather that power is the decisive factor. We will then only have the choice of also playing the power game. Which might bring its own dangers with it, for example that of patients just replacing one nonsensical treatment approach with another that's merely nonsensical in a different way.

 

[large donner]

It has to be about evidence. Otherwise you go with Colin Barton and say all we need is some guidelines, doesn't matter what's in them. And there is no means to shift the power structure other than evidence.

The fact is the evidence is all there the problem is its a bought jury.

 

[Tom Kindlon]

Somebody sent me this Facebook message for what it is worth:

Hi Tom.

I just caught sight of the thread re rejected applicants and just wanted to say;
Jonathan Edwards, comments "Charles and myself and probably the others are not NHS ME physicians."

None of those on the Lyme Guidelines were physicians and there are no Lyme Doctors/specialists in the UK - so if Jonathan is correct, then they (NICE) seem to be moving their processes to suit

..... I can't reply on the actual thread tho - so letting you know here. NICE need to have transparency don't they x

Edited to add:

I'm wrong, I just checked - ME Brain.

However - none of them are experts/specialise in Lyme -

https://www.nice.org.uk/guidance/ng95/evidence/membership-of-the-guideline-committee-pdf-4792274895

Edited to add:

Interesting;

This Consultant, Dr Neil Hopkinson - Rheumatologist.

He is listed as a gp on the committee - when I enter his name into google it comes up with this;

http://www.pooleprivatehealthcare.co.uk/
---
It looks as tho he's a private consultant operating out of the NHS?

http://webcache.googleusercontent.c...5-dr-neil-hopkinson+&cd=3&hl=en&ct=clnk&gl=uk

 

[JaimeS]

"It will be fortunate if we still have NICE guidelines at this rate

Looking at the rota my worst fear is that patients actually end up worse off than before.

 

[JaimeS]

Is part of the problem that we have had GET/CBT in the guideline for over 10 years, so anyone running an ME/CFS service in the NHS is expected to base their practice on these treatments, and those who know they are ineffective don't take jobs in those clinics because they won't do what they consider harmful?

YES.

If you really thought CBT and GET wasn't the way to go about it, you'd be in a fight for your medical license. Quite a few are/have been.

he entire problem for us (not just this NICE guideline, but everything), revolves around the fact that they have successfully convinced themselves & the medical establishment, that patient dissatisfaction with being told what the BPSers see as 'the truth' about their condition, is a symptom of the condition itself. - Patients are ill because their beliefs are 'unhelpful', and so naturally they are in furious opposition to NICE etc because they dont want to accept that their beliefs are faulty/unhelpful & be treated accordingly.

It makes for a neat circle to claim that objections arise from the nature of the illness itself.

 

[JemPD]

Looking at the rota my worst fear is that patients actually end up worse off than before.

I couldnt agree more @JaimeS , but then that's what i've been afraid of since they announced the review/update. I think it's interesting that Colin Barton seems to think they are 'better than nothing' at this point, given his Pro BPS/Miller stance. Personally I'm not sure that is the case & istm that they certainly wont be if this GDC goes ahead without changes.

 

[Jonathan Edwards]

Surely NICE should have thought about dropping the NHS requirements in order to get a balance. Would the scoping process not have made them aware of this problem?

The NICE administration who set up the review were aware of the problem before the scoping meetings.

I do not think dropping the NHS requirement would have been sensible. Any physician in the UK seriously interested in research and good practice works in the NHS, with perhaps a very few exceptions in terms of specialist surgery. Private practitioners by definition have a vested interest in selling certain treatments. An NHS physician has no vested interest in selling a treatment because you are paid the same whatever treatment you prescribe. If private practitioners had been involved the committee would have disintegrated into a slanging match about equally useless treatments.

Somebody sent me this Facebook message for what it is worth:
'However - none of them are experts/specialise in Lyme -'

I suspect all the members were knowledgeable about Lyme. People who 'specialise in Lyme' are likely to be private practitioners selling Lyme diagnoses on dubious grounds. The last thing we need for ME guidelines is private practitioners selling treatments based on just as bad evidence as anything else.

 

[MSEsperanza]

It is important that I maintain an impartial position in all this - as I have always done, even if it might not seem like that to one or two people.

I highly appreciate your impartial position "in all this", @Jonathan Edwards. This also applies to your criticism of both, psychological and biomedical research. With regard to biomedical research, for example, your discerning and honest criticism helped me a lot. I realized that in medicine, like in the social and historical sciences, the prestigious names of journals and publishers don't guarantee mainly high quality content.

Finally, I stopped to confront my doctors, health insurance providers and pension fund bureaucrats with lists of references to studies that show "evidence" for this and that regarding a biomedical cause of ME. I have earned much fewer irritated and skeptical looks and answers since then.

At the same time, your networking with scientists doing good biomedical research is encouraging.

Above all, you don’t question PWME's dignity and identities.

So yes, even though you are truly impartial and in this sense you don't belong to one side, you are -- perhaps particularly due to you impartiality -- helping us a lot.

Apologies, my comment is clumsily worded, but I thought with this in mind we could work better on the tasks ahead of us:

The reviewing of the guidelines acknowledged that vested interests had clouded the prior situation and that this needed to change.

(... )I think this is a good opportunity for S4ME to demonstrate its scientific and ethical credentials by making a well reasoned statement.

 

[NelliePledge]

But i would argue that people working in NHS CFS ME services do indeed have a vested interest in the continuing provision of PACE based approach because that is their expertise and without it they will need to find alternative roles/thinking. Depending on their ability to cope with change and degree of ideological commitment to PACE the impact of wanting to maintain the status quo will be variable from not an issue to a big concern.

Some higher up may actually have a financial interest if they have links as advisers to organisations that are under contract to provide IAPT CBT.

With those who are leading lights within the PACE promoting establishment a big chunk of their career is invested in it. They derive authority from their experience and expertise that is a vested interest.

 

[Stewart]

I do not think dropping the NHS requirement would have been sensible. Any physician in the UK seriously interested in research and good practice works in the NHS, with perhaps a very few exceptions in terms of specialist surgery. Private practitioners by definition have a vested interest in selling certain treatments. An NHS physician has no vested interest in selling a treatment because you are paid the same whatever treatment you prescribe. If private practitioners had been involved the committee would have disintegrated into a slanging match about equally useless treatments.

In addition to this, it would be counterproductive for NICE to deviate too far from their established processes given the controversies that surround ME/CFS and the existing guideline. The new guideline needs to have the confidence not just of patients, but of GPs. If the BPS lobby can convincingly claim that NICE threw their long-established policies and procedures out of the window in order to weight the guideline committee against CBT and GET, I think we all know they will. And as recent weeks have shown us, there's a journalist at Reuters only too willing to write the headline "NICE caves to pressure from actitivists" if the SMC asks her to.

NICE *have* to stick to their established processes if the resulting guideline is to be seen as credible and reliable by NHS staff. Unfortunately those processes were not designed to respond to a situation like this - where all the NHS specialists are biased in favour of questionable therapies because the earlier NICE guidance was so wrong - and it would appear that NICE consequently don't have the degree of flexibility they need in order to deal with the resulting bias effectively.

 

[Hoopoe]

NICE *have* to stick to their established processes if the resulting guideline is to be seen as credible and reliable by NHS staff. Unfortunately those processes were not designed to respond to a situation like this - where all the NHS specialists are biased in favour of questionable therapies because the earlier NICE guidance was so wrong - and it would appear that NICE consequently don't have the degree of flexibility they need in order to deal with the resulting bias effectively.

Well put. But you have to ask yourself how the earlier NICE guidance could be so wrong. Evidence is claimed to be central, but appears in reality to be secondary. We cannot allow bias in the review panel because it will override evidence just as it did with the earlier guidelines. I cannot have confidence in NICE with the current makeup of the panel. If they're serious about making this all about evidence, they should add experts in clinical trial methodology not connected to ME/CFS to the panel (seeing that the debate is mostly about whether CBT/GET studies are reliable evidence or not).

 

[Hutan]

There was talk of getting experts to speak to the group and perhaps do analyses. If we can't get experts in clinical trial design and analysis as members of the group, (and I still hope we can) surely, given the importance of the questions around these topics, there must be impartial experts of this sort to present to the group, serve as resource people and ensure that false statements are not made.

 

[NelliePledge]

They could have stuck to their parameters by having on the committee some NHS people with no involvement with CFS clinics/MUS as “independents”

The chair and vice chair are going to have a tough job if they are to try to achieve anything other than a total whitewash with the committee as currently constituted.

 

[Daisymay]

Looking at the rota my worst fear is that patients actually end up worse off than before.

Do you mean we get subverted into a general MUS category? That's my fear.

 

[Daisymay]

There was talk of getting experts to speak to the group and perhaps do analyses. If we can't get experts in clinical trial design and analysis as members of the group, (and I still hope we can) surely, given the importance of the questions around these topics, there must be impartial experts of this sort to present to the group, serve as resource people and ensure that false statements are not made.

The worry would be what sort of experts? We know from Brian Hughes that many of the issues in PACE are common practice in psych research, we know the MRC clinical trial unit was involved with PACE, look at what they allowed (caused?) to happen, and anyway they would presumably defend the indefensible as the MRC still thinks PACE is kosher.

 

[Jonathan Edwards]

But i would argue that people working in NHS CFS ME services do indeed have a vested interest in the continuing provision of PACE based approach because that is their expertise and without it they will need to find alternative roles/thinking.

Some higher up may actually have a financial interest if they have links as advisers to organisations that are under contract to provide IAPT CBT.

With those who are leading lights within the PACE promoting establishment a big chunk of their career is invested in it. They derive authority from their experience and expertise that is a vested interest.

There is a big difference between physicians and therapists. I was talking of physicians. As an NHS physician there was no need for me to have any preference for any treatment because there was a queue of people wanting to see me for diagnosis whatever I said. Therapists are in a quite different situation. I actually think that therapists should not have been included in the committee for this reason.

If people have a financial interest then that is not to do with being NHS or otherwise, although I realise that commercial bodies may want to recruit NHS based advisors.

I agree that having a research interest creates a potential conflict but it is very hard to say whether it is a real conflict. If I did research into CBT and found it ineffective would I have a conflict?

 

[Jonathan Edwards]

They could have stuck to their parameters by having on the committee some NHS people with no involvement with CFS clinics/MUS as “independents”

I suspect the problem is that none applied. There are few enough of them anyway.

 

[Jonathan Edwards]

There was talk of getting experts to speak to the group and perhaps do analyses.

I think that remains an option.

 

[TiredSam]

Their illness model has patient gaslighting built into it ("patients not reliable witness of their own condition").

A few rambling thoughts from this week ...

Yesterday I was teaching English to my favourite psychotherapist and we got on to the subject of the patient / therapist relationship. She expressed the view that the patient has to accept the therapist as a parent figure for there to be any progress. This is not far from Clare Geralda's assertion that doctors' authority may not be questioned (because the poor diddums doctor might find it distressing).

We then discussed Anna Freud's observations of babies and children and the great insights she obtained from such observation.

I was also listening to a podcast this week about epigenetics, and how mice experiments have shown that if you traumatise a mouse its grandchildren can suffer from the same trauma, from which some therapists, ever on the lookout for a new trick, have extrapolated that childhood traumas can be the result of traumas suffered by ancestors the child has never met (I know this because I accompanied my son to such a therapist years ago).

The common theme in all the above to me is the complete absence of the voice of the subject. If you draw your conclusions from observing mice or babies, you never run the risk of the mouse or baby turning round and saying "actually that shit you just made up is utter bollocks, that's not what's going on with me at all". You can just make up anything you want ... "Look, I've traumatised that mouse and made it neurotic" ("no you bloody well haven't" squeaks the mouse), "that grandchild mouse is showing signs of neuroticism" ("I bloody well am not, you are" squeak squeak), "when the parent raises their arm the baby doesn't recognise a threat because ..." ("I was actually thinking about something totally else you wierd peeping Hampstead spinster with daddy issues") etc etc

By the time these theories get to be applied on adults the psychs have worked it all out, expect not to have their parent / authority role challenged, and if the patient ever assumes a tone less deferential than that of a baby or a mouse, it can only be a symptom of their illness manifesting itself. Or maybe they are suffering from pervasive refusal syndrome.

And now the BPS brigade are to suffer "lay members" and listen to the views of patients, on a NICE Guideline Committee if you please. I wonder how that will go down with their mindset.

ETA: Did McEvedy and Beard ever see, or, perish the thought, talk to a patient? The only good patient is a compliant subject. We'll do the thinking, thanks.

 

[Sly Saint]

At the Back bench committee meeting a couple of days ago, one of the MPs mentioned Dr Ian Gibson (former MP) being his 'scientific advisor'.

I have just been reading his witness statement to the NICE judicial review in 2007 and a lot of it is still applicable:

"It is also misleading to refer to CBT & GET as ‘treatments’ of choice’. They cannot properly be described as treatments, since, as NICE admits, they do not address the core pathology of ME. Neither is there effective choice given that many patients will be denied much of the knowledge they need to make informed decisions and there is little alternative to CBT GET on offer in the NHS.

CBT/GET have also been rejected by ME patient charities in the UK. The NICE Guidelines give the false impression, to doctors, politicians, and the MRC, that effective treatments are available for ME patients."

"I am also concerned that the NICE GDG did not properly fulfil its remit and did not properly adhere to the internationally accepted high standards of guideline development such as the European Union AGREE instrument of which NICE is a signatory.

The NICE GDG also failed to endorse the World Health Organisation definition of ME/CFS as a neurological disorder despite the fact the Department of Health and Government Ministers have repeatedly confirmed that they do agree with this classification."

https://www.meassociation.org.uk/20...dr-ian-gibson-mp-to-the-nice-judicial-review/