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

Esther12 said:
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.
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The "over 60% of the panel" part of that claim is also problematic (ie not true). It would more accurate to say "Two-thirds of the NHS professionals appointed to the Guideline Development Group..."
 
I deeply respect the opinion of Jonathan Edwards and Charles Shepherd, but I do not think the ME-community should wait out the announcement of the last committee members to take action. There seems to be two arguments/concerns at play here:
  • One is that the committee might be biased by having too many members with a BPS-preference
  • The other is that some committee members such as Murphy and Bond-Kendall have a conflict of interest in evaluating the evidence on GET/CBT.
I think both arguments should be addressed separately and the latter is independent of who the other committee members are. Even if most committee members were biomedical oriented and critical of GET/CBT, we should still be making this point.

Murphy and Bond-Kendall have published about and/or delivered GET/CBT, so one could argue that they have a personal interest in maintaining NICE recommendation of these treatments. I think this aligns with what NICE in its Policy on declaring and managing interests for NICE advisory committees (https://www.nice.org.uk/Media/Defau...rocedures/declaration-of-interests-policy.pdf) calls ‘Non-financial professional and personal interests’: “when a person has a non-financial professional or personal benefit, such as increasing or maintaining their professional reputation.” There even is a case example that reads as follows:

"Example of interests: Publications in which a member expresses a clear opinion about the intervention being considered.​

Action and rationale: Potential exclusion – this is non-financial professional interest and the response will depend on the nature of the view expressed and the risk to perceived objectivity. In determining the level of involvement the chair should consider the balance between this risk and the benefit of the member’s input to the committee. It may be decided to allow a member to remain in the room to answer questions but not take part in decision-making."​

I think a formal letter should be sent to NICE demanding reassurance that Murphy and Bond-Kendall will indeed be excluded from the assessment of GET/CBT. NICE's own guidelines says that “a decision on participation should balance this risk with the benefit of the committee’s access to the person’s expertise.” But GET/CBT isn’t exactly rocket science and there is always the option to have an expert explain things to the committee members (it would probably be good thing if both a GET/CBT-proponent and a researcher who has debunked GET/CBT claims, make a formal presentation to the committee).

So I think there’s an opportunity here to make this argument now – when the full membership of the committee is known it will be all about the (potential) BPS-bias and this argument might not get the attention it deserves. It is important that the formal letter does not question or complain about the objectivity of the NICE-process as this is still in progress. It should simply demand for the guidelines on COI to be applied correctly. It should read more as a letter of concern, demanding reassurance, than an angry complaint. If these conditions are met, then I see no reason to think that such a letter might be harmful to our interests.
 
Esther12 said:
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.
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Have you seen any of them critiquing PACE anywhere and speaking out about how appalling the whole thing is? Its not hard there's a mountain of evidence against it now.
 
Statement from INVEST in ME

Addendum II - 03 November 2018
The latest news from NICE is that they have now decided to open two new positions in the working group for “Physician with an interest in ME/CFS”.

This shambles of a selection process continues to break new ground in levels of incompetence and clear signs of self-interests – from whichever “side” – seemingly being able to conduct private discussions behind the scenes with individuals and groups.
Out of sight of patients.

We would hope that these new positions reflect unbiased choices but the “behind the scenes” discussions that already seem now to be the norm would seem to indicate that is not so.

We do not need bias or balance and we do not need any monopoly of positions in the working group, whether it be from ideology or any organisation. We need honest appraisal and real science.

But perhaps it is too late for honesty and integrity or a desire to do what is best for patients.

We would hope that these new positions fulfil the NICE selection criteria and that no deals are being made “behind the scenes”.

NICE should have been consistent.
Does the creation of these new posts in the working group mean that NICE has opened the application process again and do the same rules apply as before?

Conflicts of interest statements should be stated before the working group starts its work.

We have so little confidence in NICE and certainly none in this selection process.

Perhaps the whole selection process needs to be removed from NICE and started again.

3 November 2018

ETA: this notice writes of “ the working group”. I have assumed that” guideline development group “ is what it refers to but this may be wrong.

ETA2: can anyone else get the link to link?
ETA3: title moved to top




Mod- if you think this should be added to prior thread, please amend accordingly.
 
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@Jonathan Edwards can we assume that the average ability of panel members to fully understand the PACE criticism will be low? I have not looked in depth at the list but it appears to be made up mainly of people that are not researchers. How likely is it that a dietician, nurse, occupational therapist, or average GP will have a solid understanding of clinical trial design?

If true that would be concerning. A person that doesn't understand the criticism is likely to take the position that if experts reviewed and approved it, it must be good.
 
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strategist said:
@Jonathan Edwards can we assume that the average ability of panel members to fully understand the PACE criticism will be low? I have not looked in depth at the list but it appears to be made up mainly of people that are not researchers. How likely is it that a dietician, nurse, occupational therapist, or average GP will have a solid understanding of clinical trial design?

If true that would be concerning. A person that doesn't understand the criticism is likely to take the position that if experts reviewed and approved it, it must be good.
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I think it will be my job to ensure everyone on the committee understands the key arguments relating to flawed methodology. My intention is to make things simple and to provide arguments in terms that anyone can understand.
 
Jonathan Edwards said:
I think it will be my job to ensure everyone on the committee understands the key arguments relating to flawed methodology. My intention is to make things simple and to provide arguments in terms that anyone can understand.
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So you are on the panel after all, or will you be an expert that's consulted?

My interest in this is because I have been busy making slides and graphs for the NICE review that attempt to summarize the main problems with PACE.
 
I think that any worthwhile guidelines will need to emphasise the importance of warning patients about the sort of manipulative quackery that Chris Burton is currently promoting and making money from. I doubt that a process which decided Christ Burton should be one of the people with the most power over these guidelines is capable of leading to something which will help patients.

I suspect that a committee as indisputably terrible as the current one is could be better than one which adds someone like Shepherd, which could provide NICE with some further cover.

Also, while I think Shepherd has done a lot of good things, I do worry that he can be a bit too accepting of unethical behaviour from medical staff so long as patients view them as being 'caring'.
 
Professor Laws is raising systemic issues with RCTs for CBT in psychosis and schizophrenia that suffer from similar design flaws and show no significant benefit.

It may be relevant to highlight that these problems are endemic to CBT. This isn't a problem with ME research, it's all psychosocial research that is founded on sand. And of course GET is CBT mixed in with some exercise. The intent isn't just to exercise but to convince that exercise is safe and that deterioration is wrongly assumed or perceived.

This tweet also specifically applies to the Cochrane review, since PACE aside all the trials had those exact characteristics, and even by the standards of medical research even 640 participants isn't particularly large. Here this perfectly applies to PACE as being textbook flawed.

 
rvallee said:
The intent isn't just to exercise but to convince that exercise is safe and that deterioration is wrongly assumed or perceived.
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i.e. To subvert people's natural safety mechanisms, when those safety mechanisms are in fact working perfectly well. If this were a workplace health and safety issue, then the HSE would come down very hard on anyone subverting safety mechanisms.
 
Michiel Tack said:
  • One is that the committee might be biased by having too many members with a BPS-preference
  • The other is that some committee members such as Murphy and Bond-Kendall have a conflict of interest in evaluating the evidence on GET/CBT.
I think both arguments should be addressed separately and the latter is independent of who the other committee members are. Even if most committee members were biomedical oriented and critical of GET/CBT, we should still be making this point.
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Agree with this distinction.
 
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