NICE confirm they won’t be reviewing their ME/CFS Guideline any time soon, unless… | 26 September 2013

September 26, 2013

The National Institute for Health and Clinical Excellence confirmed yesterday that they don't expect to be reviewing their guideline on ME/CFS any time soon, unless ground-breaking new evidence is brought to their attention or a new quality standard is commissioned.

NICE say that – subject to a month-long consultation with registered stakeholders starting on September 25 – they will place their 2007 guideline on ME/CFS on a new “static” list of 27 clinical guidelines that will only require occasional revisiting.

The guideline was condemned by the ME Association as inflexible and unfit for purpose when it was introduced – a view we've held pretty much since then. It called for Cognitive Behaviour Therapy and Graded Exercise Therapy to be used as the two frontline treatments for the illness.

In particular, the MEA has always been worried by evidence it receives regularly from patients that their health has been harmed by inappropriately-applied GET.

The MEA will be publishing the results of a major survey of CBT and GET later this year – based on what many hundreds of patients have told us about their CBT, GET and pacing experiences.

The following notification of the NICE consultation was received by the MEA yesterday (September 25):

Dear Stakeholders,
NICE is consulting on transferring 27 clinical guidelines onto a static list.
Consultation dates: 25th September 2013 to 5pm on 23rd October 2013
In December 2012 the NICE Board agreed a new programme for reviewing clinical guidelines should be developed. As part of that proposal it was agreed that NICE would create a list of candidates to put on a static list to ensure sustainability and efficiency of the programme. In August 2013 NICE’s Senior Management Team (SMT) agreed the first list of candidate topics for stakeholder consultation.
Below is the relevant link where you will find all the instructions and documents needed in order to get involved and make your comments:
Please also be reminded that we can only accept comments from registered stakeholders. To register as a stakeholder please fill in a short form on our wesite here:
The interim process and methods manual for the routine surveillance of clinical guidelines was agreed by NICE Board in July 2013 and can be found here:
If you have any further queries on this consultation, please contact .
Many thanks and kind regards,
Oliver Bailey
Project Manager
Centre for Clinical Practice
National Institute for Health and Care Excellence

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