NICE : a reply to Sir Andrew Dillon


22nd September 2017

Dear Sir Andrew Dillon, 

Thank you for your reply, dated 29th August.

My point about the Royal Colleges is that despite my best efforts, letters to the Department of Health, to NICE, to the Royal Colleges themselves, there seems to be no formal mechanism for holding them to account. It is extremely concerning that the JCPMH have been able to wrongly inform Commissioners that ME is a mental disorder, with apparent impunity.

Can you reassure me that NICE itself will not be wrongly influenced by the JCPMH report?

For example, given that you deny NICE lists “ myalgic encephalomyelitis as a topic under depression and anxiety” and given how it has confirmed, personally, to me that it does not list ME as a somatoform disorder, can you please explain why NICE mentions ME and chronic fatigue syndrome nine times in its recent draft guideline for Suspected Neurological Conditions, almost always within the context of “functional illness”, with “functional symptoms” defined as “complaints that are not primarily explained based on physical or physiological abnormalities. They are likely to have an emotional basis. They may mimic neurological disorders.” ?

This appears to be incongruent with your reassurances.

I am delighted that NICE has now decided to recruit a guideline committee to review CG53 after all. I note you mention it will include “people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment”.

As someone with decades of experience, who has published extensively on how to care for people with Severe ME, I would very much like to be able to consider applying for a place on the guideline committee. However I am a full-time carer and my wife is profoundly ill. Can you reassure me that provision will be made for carers like myself, to still have an active input, if they so wish, for example through Skype,  within a realistic time frame, given the high care burden?

People with Severe and Very Severe ME and those who care for them, are almost invisible to the Health Profession; it is vital that the members of the Guideline Committee, who represent the most severely ill , have extensive first hand experience.

People with ME are not universally safe within the current health system, they are at constant risk of mistreatment and misinterpretation. Can you once and for all confirm, in order to ensure the safe treatment of patients, that NICE accepts that ME is not caused by wrong thought, wrong belief or by an emotional disorder?

Can you please reassure me that, this time, the Guideline Review will not repeat the mistakes of the past:
  • Will NICE address the complex problems of terminology and classification and separate Myalgic Encephalomyelitis from “CFS” which means many different things to different people?
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  • Will NICE specify what it means by CFS?
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  • Will NICE then produce separate, appropriate, biomedical not psychosocial Guidelines, for ME and CFS?
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  • Will NICE acknowledge that “Myalgic Encephalopathy” is not a classified or recognised disorder and will it cease using the inappropriate, confusing term?
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  • Will NICE ensure that any vested interests of members, for example, links with the Medical Insurance Industry, are fully declared this time?
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  • Will NICE include, not specifically exclude, biomedical clinical expertise on the Guideline Development Committee, this time?
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  • Will NICE distribute a sufficient number of questionnaires this time and will they be appropriate for very sick people to read and answer? (Last time only 399 questionnaires were sent out, to an ME/CFS UK population of between 0.2 to 0.4%, which rendered them statistically insignificant.)
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  • Last time, the questionnaires were far too long, heavy and complicated, especially for people with cognitive and muscle dysfunction, plus they contained serious errors. Will NICE rectify those issues this time, to make sure they are accessible for people with ME?
    •  
  • Will the Questionnaires be appropriately worded this time? Last time the Key Questions seemed designed to preclude anything other than the psychosocial model.
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  • Will the health benefits, side effects and risks of any proposed interventions be considered and made public this time, when formulating recommendations, rather than be excluded from consideration and / or ignored?
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  • Can you assure me that any Systematic Review of evidence will not exclude biomedical publications, this time and will not continue to have a psychosocial bias?
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  • Can you assure me that this time the emphasis will be upon biomedical markers and possible medical treatment options and clinical care, not merely rehabilitation?
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  • ME is not like any other illness; deterioration is easily triggered by the slightest wrong intervention. Knowing how to care and approach people with ME appropriately is essential to good clinical practice. Can you assure me that NICE will offer guidance on how to care safely for people with ME, especially the most ill, who are at tremendous risk of harm.
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  • Can you assure me that NICE will take into account this time the biomedical scientific evidence (over 7000 published papers, which were excluded last time) which disprove the biopsychosocial model of ME/CFS ?
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  •  Patient submissions seem to have been ignored last time. This time, will NICE specifically take into account the opinion and expertise of people with ME and their carers, who almost uniformly reject the CBT/GET model upon which CG53 is currently formulated ?

Yours sincerely,

Greg Crowhurst













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