The Forward ME Group of charities held a meeting with Professor Mark Baker from NICE at the House of Lords on 25 June 2014.
The Minutes for this meeting can be found HERE.
At this meeting we were able to have a frank and robust discussion with Professor Baker. This covered the content and recommendations in the NICE guideline on ME/CFS, especially in relation to CBT, GET and Pacing.
Professor Baker was left in no doubt about our position: the current NICE guideline is not fit for purpose and NICE must produce a completely new guideline on this illness.
It was therefore very encouraging to find that Professor Baker accepted many of our criticisms and agreed that the 2007 guideline did need replacing.
Unfortunately, this is no longer a decision for NICE – the instruction to NICE to produce a new guideline on any disease now has to come from NHS England.
So the next step in our efforts to obtain a new NICE guideline on ME/CFS will be to meet with NHS England.
In the meantime the meeting with Professor Baker has given the ME/CFS charities in Forward ME the opportunity to raise other concerns about the NICE guideline.
This week the Tymes Trust – with whom the MEA works closely – asked the Countess of Mar if she would contact Professor Baker regarding the way in which NICE was listing CFS as a Mental Health and Behavioural Condition as well as being listed as a Neurological Condition
The Countess of Mar wrote to Professor Baker on Tuesday October 14 to point out that the Department of Health has consistently confirmed that they agree with the WHO ICD10 listing of ME as a neurological disease in G93:3 (with CFS being linked to this classification) and that WHO have stated quite clearly that no disease can appear under two separate categories
This resulted in a very swift response from Professor Baker and NICE.
By the end of the day CFS had been removed from the Mental Health section of the NICE website and the only listing for CFS (and ME) is now under neurological conditions:
Many thanks to Tymes Trust, the Countess of Mar and Professor Mark Baker.
The Forward ME Group will be meeting again at the House of Lords on Tuesday October 21.
Forward ME Group membership:
Action for ME
Association of Young People with ME
ME Research UK
Forward ME Group website