NICE Appoints Committee Rife with Bias – Take Action!

What’s been happening at NICE?

The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week, NICE announced the committee that will write the new guidelines — and it was not good news. We are demanding NICE reassess the suitability of the professionals they have appointed and make changes accordingly.
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What’s the problem with the committee?

Several professional members have conflicts of interest that may lead to bias.
Dr Gabrielle Murphy was coauthor of the PACE trial, said to be “one of the biggest medical scandals of the 21st Century” by Carol Monaghan MP. Joanne Bond-Kendall is involved in ongoing clinical trials delivering treatments that will be under question. These trials have many of the same methodological flaws as the PACE trial. Dr Chris Burton continues to conflate ME with Medically Unexplained Symptoms, a new and evidenceless category that supposedly contains dozens of different hard-to-treat, chronic illnesses.  And Dr Alan Stanton has referred a child with ME to social services after their parents followed another consultant’s advice and refused the therapies he was proposing. He recommended the child be placed in a psychiatric ward.
The majority of the appointed professional committee members have undertaken research or clinical work relating to the psychosocial model of ME. This model is at odds with research and the international consensus on best practice. A guidelines committee comprised of professionals practising a psychosocial approach to ME is comparable to a committee investigating climate change dominated by climate change deniers.
We are especially concerned that well-qualified ME nurses, doctors and scientists linked to ME charities have been turned down from the committee.

What do we want?

The biased committee members must be replaced with independent clinicians and researchers.
NICE have said that they don’t review aetiology, pathology and biological research. Due to the paucity of clinical research in ME, however, there is a lack of available and sufficiently evidenced treatment. This means that in order to write up-to-date guidelines, we need to create a committee of highly-skilled individuals with enough scientific and medical expertise to assimilate and disseminate this information.
NICE needs to introduce independent clinicians and professionals from other fields into the process. Without this, and without the excluded ME experts, the guideline is destined to be a foregone conclusion.
NICE have said recently that they have spots open for four to five additional committee members.
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What is #MEAction doing about it?

Our first step is to campaign for some of the professional appointees to be replaced.
We are in contact with other charities from around the UK. We have written to NICE requesting the ‘register of interests’ (NICE’s terminology for the conflicts of interest information they release) be made available immediately.

What can you do about it?

Use our tool and let NICE know why the situation in the UK needs to change, and why those who follow these outdated models cannot be trusted with patient care.
For too long patient voices have been suppressed, and science has been ignored. We deserve an unbiased committee who will create guidelines based on the best possible evidence.
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Click here to learn more about the committee.



8 thoughts on “NICE Appoints Committee Rife with Bias – Take Action!”

  1. I didn’t feel able to complete the email template because it included a request for the appointment of independent experts from a number of other disciplines e.g. neurology exercise science immunology rheumatology etc.
    I think this could backfire spectacularly. Many pwme in U.K. have had negative experiences of neurologists who tend to view it as a functional disorder. Along the lines of hysterical blindness etc. I felt similarly worried about the inclusion of an exercise expert. I can remember a particularly obnoxious sports and exercise psychologist on twitter, Samuele Marcora, who had had links to the CMRC. He was definitely not sympathetic to a biomedical view. I think there is a real risk they will just appoint someone like him. Most immunologists will have no experience of ME.
    What we need are the inclusion of people who already have long term experience of treating ME as a physical illness – many of whom have applied to the committee and been rejected.
    I thought the rest of the letter was excellent.

    1. That was removed just now. I have to add though, as an individual (Jaime) that if we don’t ask for those who have a hope of understanding the illness process, the request loses its teeth. I’ve known plenty of unsympathetic neurologists myself, but changing to an expert in dysautonomia would have been much more palatable to me than removing all hints of areas of expertise as though that isn’t important.
      I’d also prefer ME clinicians to develop any clinical anything if that were on offer! As we know, they have already rejected a number of clinicians the community would have considered suitable. In order to practice medicine in the UK for pwME, clinicians either use CBT and GET or are censured or their license might even be revoked. If you’ve been in advocacy for a few years, you’ve seen it play out a number of times (Speight, e.g.). Multiple people, including Jonathan Edwards, have said that NICE might have backed themselves into a corner with what they consider adequate qualifications — and this might have included something along the lines of ‘being in good standing’.
      Mentioning other specialists was a way out of the tangle.

    2. One thing to note is that all fields are editable. So you should be able to edit that field to say whatever message you want to convey. Note, though, that the default message has been amended.

    3. I entire agree that”experts” from other conditions will be part of the problem, NOT part of an acceptable solution. Unfortunately, ME require HCP and doctors who are regarded as “mavaricks” by conventional medicine and the NHS.

  2. Please highlight Jo Daniels / formerly Jo Roos – the CBT only psychologist did her PhD thesis on the FINE trial data, supervised by Alison Wearden (FINE trial lead author). She co-authored a hopeless book chapter on pain in ME/CFS with a PACE trial centre leader, and her knowledge of pain consists of the useless assumptions that 1. all our pain is musculoskeletal pain, 2. intolerance to medications means we shouldn’t bother with them – not even those applied to skin. Apparently headaches, migraines, and nerve pain don’t exist in this illness, and joint and muscle pain is sorted by gentle exercise – how movement will help the intense stabbing pain right in my big toe joint I don’t know. If psychologists are removed from ME/CFS centres – as they should be – Jo Daniels is the only one whose job is at risk.
    We need a psychologist who can see beyond CBT for those that need it – Acceptance and Commitment Therapy, Person Centered, Gesalt, there must be someone who can advise what is best.
    Some co-ordination with ME-pedia would be good on background for the review panel.
    I see there is zero representation for severe M.E. in the medical roles – which most of the panel will never have seen in their careers.

  3. Petronella Perret

    Thanks for coordinating the response to this farce. Have just sent my email.
    Just a thought Jaime, do you think there’s any point in contacting Carol Monaghan who is doing such an excellent job of raising questions in parliament about ME?

  4. Alan Christopher Creaser,

    I sent the prepared email template in Good Faith – In Hopes of Speedy action!!…. 🙂

Comments are closed.

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