“So we are stuck with a NICE guideline on ME/CFS that patients do not want, the ME Association regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.”
Dr Charles Shepherd, medical adviser, The ME Association.
Minutes of the Forward-ME Group meeting held on 25 June 2014: www.forward-me.org.uk/25th June 2014.htm
2.4 In summary, Professor Baker said:
He sympathised with the position we were in with the Guideline
The Guideline failed to address the real issues in ME/CFS
It does not promote innovation
It had a disappointing impact on specialist care and commissioning issues.
Comment from Dr Charles Shepherd, ME Association:
This was an extremely informative meeting with Professor Mark Baker from the National Institute for Health and Clinical Excellence (NICE) – he is their Director of the Centre for Clinical Practice.
As can be seen from the Minutes, Professor Baker accepts that the NICE guideline on ME/CFS is no longer meeting the needs of people with ME/CFS and it fails to take proper account of the wide variety of clinical presentations and disease pathways that come under the ME/CFS umbrella.
Neither did he seek to defend the NICE position of recommending CBT and GET to everyone with mild or moderate ME/CFS when he dealt with my written question on this particular aspect.
Unfortunately, NICE no longer decides which guidelines they are going to tackle afresh. This decision is now made by NHS England – who do not list ME/CFS in their topic selection ‘Library'.
And NICE have a full workload from the NHS England topic Library going up to 2017.
So we are stuck with a NICE guideline on ME/CFS that patients do not want, the MEA regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.
Forward ME Group members agreed that the position is completely unacceptable – so a meeting with NHS England is our next priority.
Written question submitted to Professor Baker prior to the meeting:
“Given the fact that ME/CFS covers a wide variety of clinical presentations and disease pathways, and that patient evidence consistently indicates that the majority of people find that CBT is ineffective; around 50% report that GET makes their condition worse; and over 90% find that pacing is the safest and most effective form of management, why does NICE continue to recommend the use of CBT and GET for everyone with mild to moderate ME/CFS?
“And why does the NICE guideline fail to provide any information or guidance on the management of a number of very disabling symptoms and problems associated with autonomic nervous system dysfunction – neurally mediated hypotension and POTS (postural orthostatic tachycardia syndrome) in particular?
“This evidence, along with other evidence submitted during the recent consultation process on the proposal to place the NICE guideline on ME/CFS in the new static list, indicate that there is a need to review and revise a NICE guideline that was signed off nearly seven years ago.”
Dr Charles Shepherd
Hon Medical Adviser, ME Association
10th September 2016
Bearing in mind that CG53 is pretty weak on defining “Chronic Fatigue Syndrome” and given that the PACE trial (which didn’t actually study ME anyway) results have now been recalibrated downwards by a factor of 3 (according to the original trial protocol) and therefore prove that GET & CBT are completely worthless as treatments, will the urgent need for a review of this outdated clinical guideline be raised once again with NHS England ?