NICE Guideline Committee Register of Interests, 9 April 2019

Pages and pages...

I haven't got far yet, and I don't really understand it all, but I am concerned that all Burton's MUS research is classed as 'non-specific' and therefore seems to be not considered relevant, whereas others researching ME are listed as having to have their work taken into account as possible conflicts of interest.

That suggests to me that whoever did this didn't understand that Burton includes 'chronic fatigue' or 'chronic fatigue syndrome' in his research, so in fact it is a direct conflict of interest when they are discussing treatment.
 
I agree re Burton.

So Nacul is expected to withdraw in relation to non-pharmacological management of ME/CFS due to having co-authored this paper, yet Burton is not? (Gabrielle Murphy is the only other member with a similar statement).

Nacul, L.; Lacerda, E.M.; Kingdon, C.C.; Curran, H.; Bowman, E.W.How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies?Journal of Health Psychology(2017) :1359105317695803;DOI: 10.1177/1359105317695803Open Access.2017

On application

Declare and withdraw from drafting recommendations on the non-pharmacological management of ME/CFS. The committee member may be asked to respond to specific questions from the committee regarding this paper.
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The same point can be made for a number of other members too.
 
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Agreed, the register's absence of checks on Christopher Burton's partipation - notably for MSS3 - isn't encouraging news. As declaring and managing interests is an ongoing process I imagine it's possible CB's recent relevant interests may be reviewed if MUS comes under consideration, but I would probably not now expect this.

Esther12 said:
So Nacul is expected to withdraw in relation to non-pharmacological management of ME/CFS due to having co-authored this paper
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I wonder if this exclusion is correct - I couldn't understand the basis for the exclusion from a cursory reading of the paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5581258

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With regard to the interest re co-signing the open letter to Psychological Medicine, which is held by William Weir and Charles Shepherd: for WW the comment is to declare and do nothing; for CS the comment is to review the interest at each meeting. Ostensibly the policy isn't therefore consistently applied where identical interests are held.
 
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NelliePledge said:
@Sarah but CS is coopted and doesn’t have voting rights so he isn’t in the exactly same situation as LN - maybe that’s why he is less restricted.
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You mean William Weir, not Luis Nacul? Shepherd is more restricted than Weir, on this interest. It's possible individual circumstances have impacted the difference in application. From another angle, they are both co-signatories to another open letter (the Forward ME open letter, Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists). For both Shepherd and Weir this interest will be reviewed at meetings.
 
Personally I don't think it is a good idea to write. We don't know what factors into each decision and the inconsistency I noted above is between two individuals that we do not want further restricted (Weir and Shepherd).

Members will be aware if they are being excluded to any extent and if any Guideline Committee members have concerns about how their interests are handled, I'm sure they'll raise it themselves.
 
Esther12 said:
There are lots of others
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It isn't possible to say whether different interests were determined inconsistently because we don't have complete information as to how decisions were reached for each interest. I noted above that an identical interest held by two members was ostensibly determined inconsistently (and why I think it would be inadvisable to raise this to NICE).

I would say again that if an individual member thinks that management of their interest is disproportionate then I really think it is for that member and not third parties to take this up with the Chair.
 
Sarah said:
It isn't possible to say whether different interests were determined inconsistently because we don't have complete information as to how decisions were reached for each interest. I noted above that an identical interest held by two members was ostensibly determined inconsistently (and why I think it would be inadvisable to raise this to NICE).

I would say again that if an individual member thinks that management of their interest is disproportionate then I really think it is for that member and not third parties to take this up with the Chair.
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My concern is that lots of the members seem to be free to take part in votes where they do have a COI, and where their behaviour would seem to indicate that hey are not a fit person to be making judgements on these matters that will affect the lives of others. That would be a concern to me regardless of whether Nacul was asked to withdraw from drafting recommendations on these matters, and it's something that affects patents who are on the outside of this process.

That Nacul's paper led to him withdrawing from drafting recommendations on the non-pharmacological management of ME/CFS, while a number of others with clearer COI have not, also provides a worrying indication of where the chairs believes the centre of gravity lies.

At every part of this process (aside from the decision to include additional patient representatives) it has seemed that NICE has embraced the prejudiced views of the Establishment. The decision to appoint Burton despite his history of promoting manipulative and prejudiced 'paternalism' was reason enough to think we were screwed... that he is seen as having less of a COI than Nacul with regards to recommendations on non-pharmacological approaches to CFS seems like an open embrace of disdainful quackery.
 
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Esther12 said:
My concern is that lots of the members seem to be free to take part in votes where they do have a COI, and where their behaviour would seem to indicate that hey are not a fit person to be making judgements on these matters that will affect the lives of others. That would be a concern to me regardless of whether Nacul was asked to withdraw from drafting recommendations on these matters, and it's something that affects patents who are on the outside of this process.

That Nacul's paper led to him withdrawing from drafting recommendations on the non-pharmacological management of ME/CFS, while a number of others with clearer COI have not, also provides a worrying indication of where the chairs believe the centre of gravity lies.
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They are fine with bias and conflicts of interest as long as it validates the status quo. Disappointing, but not surprising. Transparency is the way to mitigate this.
 
So, in summary, Weir and Shepherd both signed this open letter to Psychological Medicine about “recovery” and the PACE trial. But in the case of Weir the comment is :"No action other than the process of open declaration". While for Shepherd the comment is: "At each meeting, the chair will review this interest to determine whether there are any potential conflicts of interest relating to this specific area and consider the actions needed." Hard to think of a reason why signing the letter would have different consequences for them, perhaps it's simply a mistake?

Another inconsistency: both Caroline Kingdon and Luis Nacul were authors of the 2017 paper: How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? But only in the case of Nacul does the commend reads: "Declare and withdraw from drafting recommendations on the nonpharmacological management of ME/CFS. The committee member may be asked to respond to specific questions from the committee regarding this paper." This is once again very strange as the paper isn't about nonpharmacological management of ME/CFS, but about case definitions and the Oxford criteria. Also: the comment to withdrawal because of a COI is pretty rare in this document: the only other time it's used is for Gabrielle Murphy, one of the PACE-authors. For people like Burton, Bond-Kendall and Daniels, who have worked or plan to work on CBT-studies with ME/CFS patients, there's no such comment or recommendation.

In the case of Burton, the S4ME letter informed NICE that his ongoing Multiple Symptoms Study 3, includes ‘cognitive and behavioural techniques' for MUS patients, which in all likelihood includes patients with ME/CFS (although the protocol uses the term chronic fatigue). So there is a COI on nonpharmacological treatment. Yet the register of interests does not recommend a withdrawal but simply comments: "No action other than the process of open declaration."

In the case of Bond-Kendall, the document admits that she is participating in the ongoing FITNET and MAGENTA studies, as the S4ME letter highlighted. But again no withdrawal is recommended. Instead, the comment reads: "At each meeting the chair will review this interest to determine whether there are any potential conflicts of interest relating to this specific area and consider the actions needed."

Jo Daniels has also studied CBT in ME/CFS and in one of her publications she called for more research on this topic. In this particular case, the comment seems more reasonable: "At each meeting the chair will review this interest to determine whether there are any potential conflicts of interest relating to this specific area and consider the actions needed."

I would suggest sending a very short and polite letter to NICE and Peter Barry about the COI of Burton and Bond-Kendall not being adequately addressed and then referring to our previous letters. The inconsistencies are I think less important. In the case of Weir/Shepherd, it may simply be a mistake in what is a very long list. The withdrawal of Nacul is more puzzling but as @Sarah noted, Nacul himself is in the best position to argue his case. We don't have all the info so it's difficult to make any hard claims. Perhaps we should simply mention the Nacul case to NICE, asking further clarification because the paper referred to isn't about non-pharmacological treatments.

What do others think? Should S4ME try to formulate a letter or not?
 
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What would have been the procedure by which the decisions were made? Would they have been made by the chairman, the chairman acting in co-ordination with the officials, or the chairman rubber-stamping the decisions of officials?

Errors like this can easily occur in good faith. What matters is how they are dealt with when inconsistencies are pointed out. It will tell us much about the process.
 
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