The ME Association learns that NICE consulted with a patient representative, two neurology experts, three psychiatry experts, and one paediatric expert over the recommendation to take ‘no action' in the surveillance report.
14 August 2017
Dr Shepherd has since responded to this latest letter from NICE.
You can read his reply, below.
As part of the current NICE guideline review consultation, stakeholders were sent copies of a surveillance report that had been compiled in association with certain ‘topic experts'.
The ME Association, and others, felt it might be important to try and learn more about the review process as well as the names of those who were consulted and what contribution they had made to the report and its recommendations.
Dr Shepherd, Hon. Medical Adviser to the ME Association, had been in correspondence with NICE in pursuit of the information, and we received the following reply late last week. What remains unclear is whether the experts and patient representative are among those listed in the 2007 guideline, or were contacted specifically for this 2017 review:
Friday, 11th August 2017
Dear Dr Shepherd
Thank you for your follow up email about the topic experts in respect of the surveillance review for the CFS/ME guideline.
In your email you refer to a request for details of membership of the expert group that reviewed the evidence for NICE. There was not a topic expert group or panel as such, but we did ask topic experts and members of the original guideline development group for their opinion.
To be clear, it is the NICE surveillance team that conducts the literature searches and reviews the evidence. They summarise the relevant evidence and highlight any studies that may have an impact on our recommendations. Information identified by the surveillance team forms the basis of the review proposal which is considered by NICE’s Guidance Executive. I can see that my colleague XXXX provided details of the roles within the surveillance team in his previous response.
The final decision about whether an update is needed is based on a balanced assessment of new relevant evidence published since the guideline was developed, the view of topic experts, feedback during consultation and other sources of information on the continued relevance of the of the guideline. The findings of the check on the need for an update are discussed with topic experts. All proposals go through an internal validation process before submission to Guidance Executive. It is Guidance Executive that takes the decision to update the guidance or not.
You commented on our previous email where we say that ‘we do not routinely publish the identities of topic experts’. The use of the word ‘routinely’ was meant to indicate that this is not part of our process, rather than they are available on request. As you may be aware we have been asked for the names of the topic experts in a freedom of information request. I can confirm that we hold the names of the topic experts who were asked for their opinion on the relevance of the published guideline. However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act.
For your information the topic experts are from the following fields: neurology (2), psychiatry (3), paediatrics (1), patient representative (1)
National Institute for Health and Care Excellence
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14 August 2017. Dr Shepherd has responded to the above letter from NICE as follows:
Thank you for your reply which explains the background as to how and why the group consisting of topic experts and previous guideline development members was put together, along with the role of the NICE surveillance team.
We do, however, remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS.
I would be grafeful if you could answer three questions that follow on from your reply:
Firstly, as you will be aware, over 15,000 people have signed the MEA petition calling for an update/review of the NICE guideline on ME/CFS. The Forward ME Group of Charities, chaired by the Countess of Mar (copied in), has also called for a review of the guideline.
Am I therefore correct in concluding that the patient representative on the topic expert group, who presumably agreed with the recommendation to not update the guideline, was not a representative of one of the national ME/CFS charities, and was not put forward by one of these charities.
Secondly, we are surprised and concerned to see that the topic expert group consists of three psychiatrists, only two neurologists and no physicians from any other key clinical areas that ME/CFS involves – infection and immunology in particular. ME (and CFS) is classified by the World Health Organisation in ICD10 as a disease of the central nervous system – a classification that is accepted by the Dept of Health. ME/CFS is not a psychiatric illness. Why, then, did NICE decide that they required more psychiatrists than physicians and no other clinicians apart from two neurologists?
Thirdly, you state that there is exemption from disclosure of names under two sections of the Freedom of Information Act. Please could you state which sections these are.
If you are unable to answer these questions please could you refer them to someone who can.
Finally, I have not been able to find out who NICE is actually accountable to following the decision to change its status as a Special Health Authority that was previously accountable to the permanent secretary at the Department of Health.
Please could you therefore clarify who NICE is now accountable to at the Department of Health in its role as a non departmental public body.
Dr Charles Shepherd
Hon Medical Adviser, ME Association.