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

TiredSam said:
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.
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:confused::banghead::banghead::banghead::banghead::banghead:

rvallee said:
It's a truly exceptional situation in that it's completely abnormal that most of medicine would stand against the interests of a group of patients. It's just one of those things that aren't supposed to happen so the normal rules naturally create a broken process.
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It actually reminds me of what we were discussing before, @rvallee -- re: politics. Those who are used to playing by the (unspoken or written) rules are pretty much flummoxed when someone has a goal they value above the rules. In this case the goal is wanting CBT and GET to remain the mainstream therapies in the UK. We've seen them misrepresent their data, exaggerate their findings and pretend patients have threatened them, and now they're stacking the deck.

I think we just sort of have to view this as: they will step far outside the bounds of the spoken and unspoken rules to accomplish the goal. Moreover, they will believe they have the high ground, because the goal itself is considered good. Therefore every step they take towards that goal is still a good action as far as they are concerned. There may be a line in the sand they won't cross, but we haven't stumbled across it, yet.

Sorry to get so philosophical on this, but I've seen this pattern repeat in a lot of groups. The question becomes how to break or counter the pattern.
 
Daisymay said:
2. The Dept of Health accepts ME as a neurological disorder (letter dated 11th February 2004 to Lady Mar from Lord Warner, Parliamentary Under Secretary of State, Department of Health; this was confirmed on 2nd June 2008 by Lord Darzi, Parliamentary Under-Secretary of State, Department of Health: “My Lords, I have acknowledged that CFS/ME is a neurological condition… as I said earlier, (it) is a neurological rather than a mental condition” (HLPQ).
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I never find this argument effective and actually cringe somewhat when I hear it. It is a political argument and I don't think that will lead to anyone changing their minds. What we need are arguments based on evidence.

To see what I mean, imagine if it were the other way around and the Department of Health had declared ME to be a psychological disorder. Would we then accept this as the definitive statement that shouldn't be challenged? Of couse not. We would argue against it based on evidence.

Since we wouldn't find such an argument persuasive, why would we expect anyone else to?
 
Daisymay said:
3. NICE is required to accept the WHO ICD classification of ME as a neurological disorder. When the last Guideline CG53 was being prepared, even though NICE received over 11,000 pages of submissions about it and despite ostensible patient representation on the GDG, the Chairman of the GDG, Professor Richard Baker, failed in his remit to uphold Government policy by permitting influential members of the GDG to refuse to accept the WHO classification of ME/CFS as a neurological disorder as directed by NICE itself: on 10th September 2002 the Communications Director (Anne-Toni Rodgers) of NICE Special Health Authority issued a Communications Progress Report which, at section 2.7.1.5 was clear: “The ICD-10 classification is used for the recording of diseases and health related problems…The WHO produces the classifications and ICD-10 is the latest version…the classification codes are mandatory for use across England”.
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I asked NICE directly about this and they said they didnt have to use WHO categorisation. I didn't have the reason to hand as to why they are supposed to abide by this ( - I think it was something to do with EU law?). So I couldn't challenge them further on it. I will check the email that they sent me on this to see what they said specifically about it.

Edit to add info from NICE:
I actually asked them the question as part of my FOI request to them and this was the response

"It is not a requirement for NICE to follow WHO classification in the development of NICE guidelines.

The NICE guidelines manual sets out the processes and methods we use when developing our guidelines. It does not state that we must use a particular set of health condition/disease classification or diagnostic criteria, and there is norequirement in the manual that states we must follow WHO classification when developing our guidelines.

The classification of an illness or condition may be discussed by the guideline developers. This can depend on the scope of the guideline (which is finalised after public consultation with stakeholders), and on the available evidence. Mention of a particular classification in a guideline doesn't automatically mean that's how NICE is classifying a condition or illness - unless it explicitly says so in the guidance."

As I didnt have the info on why they were supposed to follow WHO i didnt challenge this but could go back to them if we do have anything in writing about it. I was going to ask Valerie Elliot Smith but forgot!
 
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Given NICE bases its guidelines solely on evidence (one has to hope by that is meant reliable evidence), then it's essential they really do understand when/where evidence is unreliable. And yes, I fully appreciate it's hard to imagine how they could not understand this about PACE etc, but I don't think we should take anything for granted. Although the arguments have been presented ad nauseam, is there a different approach needed for this situation?
 
Jonathan Edwards said:
My thought is that it would be reasonable for a carefully worded response to come from S4ME once the full complement of the committee is known.

[snip]

Put another way I think this is a good opportunity for S4ME to demonstrate its scientific and ethical credentials by making a well reasoned statement.
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I agree with this.

Timing is important.

We have to know how to play the bureaucratic and political games if we are going to win. It sucks big time, but that is how it really is, always has been, and always will be.

It is how the likes of Wessely have become so powerful, they know how to play those games, and there is no denying that they have done so superbly for decades, much to our cost. :grumpy:

It is not enough to be correct, you also have to be able to convince those in power that you are correct.
 
MEMarge said:
My hope is that Carol Monaghan and other MPs will be able to bring the errors of PACE, and other BPS studies to light.
Hopefully the stranglehold that Wesseley and friends has is not pervasive enough to close this down...
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I don't know if anyone has already posted this link, so appologies if it is already mentioned in this thread, but Carol Monaghan has already raised this in Parliament in the discussions about a full debate on ME, see http://data.parliament.uk/writtenev...oposals-for-backbench-debates/oral/92145.html

Carol said in relation to NICE:

The National Institute for Health and Care Excellence is currently updating its guidelines for the treatment of ME, as a result of the pressure that the ME community put on it because of its current recommendation for graded exercise therapy. There is concern that graded exercise therapy will remain because over 60% of the panel—it is called the guideline development group—are supporters of PACE. It calls into question the independence of this particular review of current treatments.
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Is there already a thread on this [discussion of the Backbench Bussiness Committee], that I have missed, or do we need a new thread?
 
Are we getting the format of a strongly worded protest letter to NICE about the potential bias of the Committee:

- Introduction about the protest against the current guidelines based on bad science relating to CBT/GET, leading to the current guideline rewrite (perhaps references in appendix of peer reviewed articles relating to problems with PACE and the Cochrane Review) Quote of Carol Monaghan's comment 'the biggest medical scandal of the twenty first centuary' (Westminster Hall debate)?
- Widespread concern about the make up of the new committee's potential bias, not only within the patient community, but also the scientific community (?) and politicians (inc Carol Monaghan's comment above to the Backbench Committee)
- List details of proposed Committee Members demonstrated commitments/potential bias, including research and publications, and potential conflicts of interest including involvement in selling MUS training, speaker engagements (perhaps examples with a full list as appendix)
(- Failure to appoint any professionals not openly committed to CBT/GET at the same time as rejecting a lay member application appearantly on the grounds that their expressed opposition to this approach rendered them biased? NB the professional applicants that have the trust of the patient community were rejected?)
- Other concerns about the balance of the committee, such as over representation of specific services, Bath? and Liverpool?
- Specific questions about how this imbalance came about (link to NICE's assurances of balance in the review??) and how NICE intends to deal with it.
- Then to highlight the issue list who we plan to copy the letter it too. Members in the UK could also copy it to their MPs.

My feeling is not necessarily that this will achieve anything concrete at present, but by having the NICE selection issues raised and the anti science bias of the committee on public record and our points widely circulated, we are putting NICE and the committee members on notice and providing some degree of support/protection for the lay members.

I do not know if the bias of the selection was deliberate, personally for me it seems hard to rule this out, or an indirect consequence of the current NICE procedures and the current make up of the British NHS as @Jonathan Edwards convincingly suggests, but either way this is something NICE needs to address.
 
strategist said:
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.
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As I have already said upthread, I don't want to sound as though I'm suggesting we should be complacent about the biased members of the panel - but I do think we need to keep in mind that the composition of the current panel is far less biased than the previous panel was. And the chair and vice-chair (who will have a lot of scope to influence the committee's work) do not seem to be BPS proponents this time, which wasn't the case with the previous committee. And last time around the scoping document for the guideline seems to be have worded in such a way as to deliberately exclude evidence that would challenge CBT and GET, which again isn't the case today (as far as I can tell).

Bias in the composition review panel was certainly a problem when the guidelines were drawn up, but it wasn't the only factor in determining what we ended up with. Even with the eight biased committee members the situation today looks a lot more promising than it did last time NICE looked at ME/CFS - although that's obviously not a reason to turn a blind eye to the presence of so many biased professional members.
 
I think NICE are setting this up to slightly modify the current guidance for their CFS/me. I dont think they are bowing to patient pressure anymore than that. So it will be a bit more nuanced and cautious about GET. I don’t see how the panel can remotely correlate with the idea of a complete over haul of how ME is approached in UK or objective review.
 
Sean said:
It is not enough to be correct, you also have to be able to convince those in power that you are correct.
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Absolutely! It's the convincing that counts. The BSP'ites have proved over and over that convincing people they are right is what counts, even though they are wrong.
JaimeS said:
If only logic and decent evidence won out as a rule.
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... and other whimsical fairy tales ... ;):rolleyes::)
 
Peter Trewhitt said:
Carol said in relation to NICE:

The National Institute for Health and Care Excellence is currently updating its guidelines for the treatment of ME, as a result of the pressure that the ME community put on it because of its current recommendation for graded exercise therapy. There is concern that graded exercise therapy will remain because over 60% of the panel—it is called the guideline development group—are supporters of PACE. It calls into question the independence of this particular review of current treatments.
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Is there already a thread on this [discussion of the Backbench Bussiness Committee], that I have missed, or do we need a new thread?
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I actually wondered if that 60% "are supporters of PACE" could be a bit strong, as some have not commented on that. 'Connected to the provision of GET might have been better'? - I haven't looked at the details on all these people yet though.

Tagging @Eagle ICYI.
 
BruceInOz said:
I never find this argument effective and actually cringe somewhat when I hear it. It is a political argument and I don't think that will lead to anyone changing their minds. What we need are arguments based on evidence.?
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I wasn't thinking it would change their minds of those who hold strong BPS views, but rather that if the GDG are required to start from the WHO/SNOMED classifications that might bring into question the validity of any the research which is based on the behavioural view of ME/CFS and the use of CBT/GET to change peoples wrong illness beliefs. So when they come to reviewing the "science" to access the methodology, cost effectiveness etc they would be coming at it from a different perspective.
 
Daisymay said:
GDG are required to start from the WHO/SNOMED classifications
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I agree with @BruceInOz that we should from now on keep well away from this sort of argument. The GDG is supposed to decide based on evidence and reason, not the classification choice of some bureaucratic organisation. And considering the debacle from the Guardian today it looks as the one thing to keep away from is this business of psychological versus physical. It is like the whole football team turning backwards and kicking the ball into their own goal.
 
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