I have replied to NICE today as follows:
Dear xxxxx
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.
Yours sincerely
Dr Charles Shepherd
Hon Medical Adviser, MEA