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:
www.nice.org.uk/guidancemenu/conditions-and-diseases/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
BRAME
ME Association
ME Research UK
ME Trust
ReMEmber
Tymes Trust
Forward ME Group website
…’NICE was listing CFS as a Mental Health and Behavioural Condition as well as being listed as a Neurological Condition’
Unbelievable.
Not really, sadly.
Finally, some positive responses to the endless determined and essential efforts the ME charities make to getting better classification and standard of care for ME patients!!!
Thanks very much to Tymes Trust, MEA and Countess of Mar!
ME patients would be lost without these continual efforts!
So glad we have a step forward, although there’s obviously a long way to go, and we don’t know if a new guideline will be a lot better than the appalling current one, but we do know that with these charities and key influential people involved – and being listened to – this gives our best chance of that!
Let’s not forget to thank Prof Mark Baker from NICE as well – who has admitted in effect that the NICE Guideline on ME/CFS is no longer fit for purpose: see agenda item 2 of the Minutes of the last meeting of the Countess of Mar’s Forward ME Group: http://www.forward-me.org.uk/25th%20June%202014.htm
It takes some guts to do that!
I guess the more we all have the guts to stand up for what is scientifically correct, the less of a brave risk it will be for individuals to do what is right. I think this is lovely news.
BIG NEWS! Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project to unlock the mystery of ME/CFS. See the END ME/CFS Project and the remarkable new END ME/CFS Scientific Advisory Board. http://www.openmedicinefoundation.org/
https://www.facebook.com/OpenMedicineFoundation