Trial by Error: NICE Declines to Disclose Names of Experts

By David Tuller, DrPH

The Countess of Mar, a well-known advocate for ME/CFS patients in the House of Lords, has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have I. But the response to the countess indicates that the process is proceeding with a lack of full transparency.

Here’s the response from the Department of Health:

“The National Institute for Health and Care Excellence (NICE) routinely consults a range of topic experts as part of its surveillance review process. NICE is currently consulting on a review proposal for its clinical guideline on the diagnosis and management of chronic fatigue syndrome and myalgic encephalomyelitis. NICE does not routinely publish the names of topic experts as they are not part of the decision making [sic] process for the surveillance review.”

This answer is of course unsatisfactory. The last sentence is the operative one, so let’s deconstruct it. In the first part of the sentence, NICE is telling us that it does not routinely publish the names of topic experts. But just because it doesn’t routinely do something is not necessarily relevant to whether it should take this step now. Perhaps no one has asked for these names before. Presumably the development or review of most guidelines is not so controversial as this particular one for CFS/ME. (The patient-preferred name for the illness, and the most appropriate one, is of course just ME, without the CFS tacked on.)

It is also not routine that more than 15,000 people sign petitions expressing serious dissatisfaction with existing clinical guidelines. But that’s how many have put their names to the petition launched by the ME Association. That’s a huge number of unhappy patients and advocates; NICE would be well-advised not to ignore them. Perhaps the strict adherence to routine measures—like not disclosing the names of topic experts involved in the process—should be reconsidered in the current urgent context. (The petition drive closed today to coincide with the deadline for the stakeholder comments on the NICE guidelines.)

The second part of the sentence explains the purported reason for not sharing the topic expert names: they are not part of the decision-making process. First of all, what does that mean? Given that topic experts have been consulted in this instance, it is bizarre to read that they are “not part of the decision-making process”? Is their advice then ignored completely? Are they just a fig leaf to create the appearance of consultation while NICE does what it wants? If their advice is reviewed and considered rather than tossed right in the trash, why does the statement declare that they are not part of the decision-making process?

Perhaps the statement means that the topic experts are not officially in the room or on the conference call when the final approval is made. But even if that were the case, why would that mean their names should be kept from the public? Is the development process of NICE guidelines an official state secret that demands utmost protection?

And if the topic experts are not involved in the decision-making, as the statement asserts, then what exactly is their function? And who are the people involved in making the decision? Are they themselves experts, or just functionaries listening to others? Is it the group that originally developed the 2007 guideline? That group includes Professor Esther Crawley [Correction–see below], a close colleague of the PACE authors-—so that’s not a particularly good sign. Given the enormous impact of these guidelines, it is imperative that the process be conducted as openly as possible—which, given the response to the Countess of Mar’s question, is so far not the case.

Correction, July 24th: In the initial post, I mistakenly wrote Professor Trudie Chalder.

Comments on this entry are closed.

  • Lou Corsius

    As far as I can see NICE has a public function, which means it has to be transparent how decisions are made. The public has a right to know who contributed to the review and to the decisions made, on what grounds these decisions were made and on what evidence they were based. Why hide this information? It only feeds the suspicion. Be open and be honest.

  • leelaplay

    David, should they decline to publish names, I wonder if it would be possible to ask whether the experts consulted hold views that that ME and CFS are physical diseases or psychological problems. Or perhaps whether they publish in medical or psychological journals…. or some way of determining the type of input they solicited.

  • Sheila Campbell

    Well said I can see no reason why a public body should not make the names public, unless fo course they have something to hide?
    Thanks so much Dave and the Countess of Mar for trying to find out who’s involved, of course we all have a damn good idea but we need to know for sure!

  • Anton Mayer

    This is useless. When attacked from this angle, their standard tactic is to retreat to the position that they’re merely helping patients cope with their physical illness.

  • Scott Simpson

    Well they’re certainly making it seem like they’re trying to obfuscate their process of determining if a review of ME guidelines is necessary. Given the depth of controversy, with the harm from CBT/GET voiced by 15,000, it is bewildering that they would pass over treatment review.

    If I wasn’t aware of the very strong institutional bias against ME around the world, I’d find it hard to believe that a Department of Health wouldn’t take action to protect the ill. Guess it speaks to the insidiousness of the bias against ME and ME patients.

    Thanks David, for holding these institutions accountable for the harm they are perpetuating.

  • Wendy Boutilier

    This statement of NICE is so out of whack with the changing scope of good science vs bad science, transparency vs smoke & mirrors, ME or CFS. This is the NICE “modus operandi” of the past and possibly the present unless PWME become a lot more vocal – POLITE – but vocal. Just exactly what chronic disease are they talking about. There is no such thing as ME/CFS or CFS/ME. There is Chronic Fatigue Syndrome and then there is Myalgic Encephalomyelitis. Not even WHO couple them together. The school of Wesseley know very well that there has never been a criteria for CFS so they attach ME to give it some weight and sail the seas of government funding to chalk up another Fatigue study.

  • Anton Mayer

    These experts are probably the PACE authors or close allies. Apologies for saying the obvious.

    If true they have infiltrated and influenced NICE, Cochrane, Journal of Psychological Medicine, and possibly The Lancet to create the appearance of a consensus.

  • Barbara R

    Names of Experts? We shall see………..
    Reference No: EH82739
    FREEDOM OF INFORMATION ACT 2000

    Thank you for your request, sent to our office on 12 July 2017, in which you asked NICE for information (set out in the attached document) under the FOI Act.

    Your request will now be considered and you will receive a response within the statutory timescale of 20 working days as defined by the Act, subject to the information not being exempt or containing a reference to a third party. In some circumstances we may be unable to achieve this deadline. If this is likely you will be informed and given a revised time-scale at the earliest opportunity.

    Communications
    Executive

    Corporate
    Communications

    National
    Institute for Health and Care Excellence

    Level1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
    Kingdom

    Tel:0300 323 0141 | Fax: 0300 323 0149

    Web:http://nice.org.uk

    The FOI issued by me to inform the process however, will unlikely be delivered within the consultation time frame.

    Dear Mrs Robinson
    Thank you for your follow-up questions.. Please see further information required (attached).

    1.Contributors and declarations of interests- The Guideline Committee?
    2. Members of the Committee and other contributors to the guideline declared any relevant interests?
    3. [Add guideline number to hyperlink] in line with the NICE conflicts of interest policy?

    As you have separately requested the same information under the Freedom of Information Act, your request will be considered under the Act. W ewill respond as soon as possible (and certainly within the statutory timescale of 20 working days, as defined by the Act)

  • Barbara R

    My original wording of the request and seperate FOI.

    Perhaps you could also assist me on the following;regarding (corrected) Chronic Fatigue
    Syndrome Myalgic Encephalomylitis : diagnosis and management (CG53)?

    FOI request
    1) Please advise of the personnel who constitute the NICE Collaborating Centre technical team for chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):(corrected) Chronic
    Fatigue Syndrome Myalgic Encephalomylitis : diagnosis and management (CG53)?

    (I presume, as with previous NIHCE/NICE Guidelines, a technical team at the NICE Collaborating Centre will be responsible for this guideline throughout its development.)

    From your literature on the Consultation for Intermediate Care;

    “They provide information for the guideline committee, drafted the guideline and responded to consultation comments.”

    FOI request 2;
    2) Which individuals and organisations constitute the Guideline Committee for chronic fatigue
    syndrome/myalgic encephalomyelitis (or encephalopathy):(corrected) Chronic Fatigue
    Syndrome Myalgic Encephalomylitis: diagnosis and management (CG53).diagnosis and
    management (CG53) please?

    3) Could the correct punctuation indicated above (2) please be applied to all future notices1?
    Regards,
    Barbara Robinson

    (Suffolk Youth & Parent Support Group and Suffolk & Norfolk Service Design and Implementation
    Group who are jointly contributing to one of the registered stakeholder groups)

    Postscript
    From the information sent to stakeholders on NICE: Intermediate Care Consultation;
    “Contributors and declarations of interests- The Guideline Committee Members of the Committee
    and other contributors to the guideline declared any relevant interests[Add guideline number to
    hyperlink] in line with the NICE conflicts of interest policy”
    Comment
    I was told today on the phone by NIHCE (NICE) when I requested, “Contributors and declarations
    of interests- The Guideline Committee-”;
    -Members of the Committee and other contributors to the guideline declared any relevant interests
    in line with the NICE conflicts of interest policy,

    1″Recommendation 10:
    We would encourage the classification of CFS as a ‘Nervous System Disease,’ as worded in the ICD-10 G93.3″From the August 2005 meeting of the CFSAC at the DHHS (Department of Health & Human Services, USA)

    “CFS/ME should be classed alongside other diseases such as multiple sclerosis and motor neurone disease”.

    -Professor Sir Liam Donaldson-

    Chief Medical Officer for England and Wales

  • Valentijn

    NICE has created a system where there is no accountability: it’s not NICE’s fault, because the experts made the recommendation, but it’s not the experts fault, because NICE made the decision. The entire bunch need to be thrown out, and a fresh start made – with transparency and accountability.

  • Barry

    Excellent as usual David. I especially like your deconstruction of NICE’s last sentence, clearly exposing it for the sleight of mind misdirection it is.

  • Matthew G Webb

    Dam right we have to find ways of reaching people outside the ME community . The get/cbt lobby are not in this for anything but self protection and gain. They will stop at nothing to cover their tracks. We must realise the level of corruption that we are up against and come up with more brilliant ideas to let the public see yet another misuse of power.

  • Steve Hawkins

    They can’t get away with that. Decisions that may involve large amounts of public spending have to be made in an open and accountable way, as should any to do with public health. Imagine the outcry if they made decisions about what drugs to allow the NHS to use, but only consulted with the drug co that gave them the best corporate hospitality?!

    Of course they have to show how they make their decisions. Even if the names are withheld, the minutes of all the meetings and any written advice they were given *IS* on the public record and must be subject to FOIA.

  • JustinReilly

    Exactly!

  • JustinReilly

    Excellent work! Thank you, Dr. Tuller!

  • JustinReilly

    We need transparency. This is totally unacceptable!

  • Adam Lowe

    Can we seek legal advice? It’s about time a class action lawsuit was filed against NICE and the NHS. Today, I’ve see disgustingly troubling stories of people who’ve been referred to psychiatric services where they’ve been told their biological symptoms are the result of psychological trauma, including grief and abuse. This is pseudoscience of the kind that tries to ‘correct’ LGBT people in ‘gay conversion therapy’. It’s outdated, Freudian manipulation of UK healthcare, where psychiatrists hoover up all the available funding for a neurological illness. This must not be allowed to continue. It’s a travesty.

  • Brenda Vreeswijk

    I think it’s best to just ignore the 15.000 people signed the petition and go on with business as usual.
    Ignoring the ones that are depending on the guidelines and hush about the people making the guidelines no matter what.
    “Noting to see here…move along people”
    Thanks for publishing David…

  • Sean

    I hope that the Countess, the MEA & David appeal the decision and take it to the Information Commissioners Office (ICO) if necessary.

  • clark ellis

    This is a controversial disease. Of course it is necessary, and appropriate, to disclose who is involved as experts in any and all parts of the process. Is the pool of experts consulted really so unbalanced that NICE are afraid to reveal it? Regardless of whether it is or not, patients, charities and academics are unwilling to accept a lack of transparency as we have in the past.

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  • Wolfita

    Please could all new articles be listed on Virology’s http://www.virology.ws/mecfs/ page?

  • Jo Best

    For info for anyone joining the conversation who may be unaware of the Judicial Review of the NICE guideline. Proceedings were issued just a few months after publication of the originial guideline in 2007 and the decision was published in 2009: http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html

    “Over twenty internationally renowned ME/CFS experts provided Statements in support of the Claimants’ case for the Judicial Review of the National Institute for Health and Clinical Excellence (NICE) Clinical Guideline on “CFS/ME” that was brought by ME/CFS sufferers Douglas Fraser and Kevin Short and heard before Mr Justice Simon in February 2009 in the High Court in London.

    Many authors of the Statements expressed concern about the recommendation by NICE that the primary management intervention for ME/CFS should be Cognitive Behavioural Therapy and Graded Exercise Therapy (ie. CBT/GET, which are the subjects of the PACE Trial).

    Regrettably, many of the experts’ Statements were not used.”

    In full at: http://www.investinme.org/Article-361%20Statements%20of%20Concern%20CBT-GET%20JR%20Feb09.shtml

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