Reply from NICE to my further email dated 14 August:
Dear Dr Shepherd
In relation to your first two questions, as you are aware, we are in the process of reviewing the results of the consultation and will make our final decision in due course. We will make the decision public, together with any other statements we think will be helpful to contextualise it.
Until then, we don’t intend to respond to enquiries about the provisional decision. It may be that our final decision, when placed in the public domain, will help you with some of your questions, but if not, we will endeavour to answer them as best we can at that time.
Regarding the decision not to disclose the names of the topic experts, I confirm that the following two exemptions from the Freedom of Information Act were applied:
Section 40 – personal information
Section 38 – health and safety
The National Institute for Health and Care Excellence (NICE) is a non- departmental public body (NDPB).
As such we are accountable to our sponsor department, the Department of Health, but operationally we are independent of government.
You can read more about the relationship between NICE and the Department of Health in the
framework agreement which sets out roles and responsibilities, what accountability and governance arrangements are in place, and describes how the Department of Health is assured that NICE's role is being fulfilled efficiently and effectively.
The agreement also describes the specific guidance and other rules set by DH and central government that NICE must comply with.
The ministerial lead for NICE is the Parliamentary Under Secretary of State for Health (Lords), the current holder of this role is Lord O'Shaughnessy.
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Kind regards
Janet
Janet Fahie
Communications Executive
Corporate Communications
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
------------------- Original Message -------------------
From: Charles Shepherd
Received: 14/08/2017 12:26
To: Countess of Mar; NICE Mail
Subject: Re: NICE enq ref EH83201 (follow up to EH82697) - CFS/ME review
Dear Janet
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