The Countess of Mar's Forward-ME Group, who meet at the House of Lords, have told the National Institute for Health and Clinical Excellence of their ‘extreme concern' that NICE propose to put the review of their 2007 Guideline on ME/CFS on the NICE static list.
We are writing to you as members of the Forward ME Group – an alliance of national patient support and research funding organisations for people with ME and CFS.
At our meeting on Tuesday 15 October at the House of Lords we discussed a proposal to place the NICE Guideline on CFS/ME (CG53) into the static list.
We express our extreme concern over this proposal and strongly feel that the guideline must remain on the active list for the following reasons.
Medical and scientific advances in relation to ME and CFS are taking place very rapidly. We therefore believe this is completely the wrong time to remove this guideline from the active list when these developments need to be regularly reviewed.
When Professor Peter Littlejohns attended the meeting of the All Party Parliamentary Group on ME in February 2007, it is minuted that:
“He explained that he had been responsible for clinical guidelines at NICE since their inception. All NICE guidelines were produced on the basis of best available evidence and on a process based on transparency, active consultation and review. He added that guidance however robust is not set in stone; medical advances can happen very quickly and NICE aims to make guidance as up to date as possible.
“A total of 118 guidelines, including 51 of clinical guidance, have been produced over the past 18 months. NICE was the biggest guideline production unit in the world. Any organization affected by a guidance should be part of the development of that guideline.” (None of which has ever materialised).
Individual members of the Forward ME Group who are also stakeholders will be sending submissions which will cover our concerns in more detail. However, as a united group representing people with ME and CFS in the United Kingdom, we feel so strongly about this proposal that we are sending in this joint response.
Yours sincerely
Countess of Mar, Chairman Forward-ME on behalf of:
Tanya Harrison, BRAME
Janice Kent, ReMEmber
Charles Shepherd, ME Association
Sonya Chowdhury, Action for ME
Jane Colby, Tymes Trust
Sue Waddell, ME Research UK
Hannah Clifton, ME Trust
Mary Jane Willows, Association for Young People with ME
Anne Faulkner, Chronic Fatigue Research Foundation
Arlene Wilkie, Neurological Alliance
To read the ME Association's individual submission to NICE, click HERE.