Why we are asking about the NICE guideline on ME/CFS in our website Quick Survey this month | 1 November 2016

Why are we asking about the PACE trial re-analysis and revision of the 2007 NICE guideline on ME/CFS in this month’s MEA website Quick Survey?

The ME Association has consistently held the position that the 2007 NICE guideline on ME/CFS is unfit for purpose – especially in relation to the recommendations regarding CBT and GET and the failure to endorse Pacing as a safe and effective form of activity and energy management for ME/CFS

We have also argued that the NICE guideline has a number of other serious defects and needs to be comprehensively revised:

www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/

And. when a revision does finally takes place, proper weight must also be given to ‘patient evidence’ on the efficacy and safety of CBT, GET and Pacing – as is contained in the our ‘patient evidence’ report:

www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/

Following on from the Freedom of Information (FoI) tribunal decision to release some of the PACE trial data, and the subsequent re-analysis of this data, the clinical trial evidence in support of CBT and GET can no longer be relied on by NICE,

And as it now appears from another FoI request in relation to correspondence involving NICE, NHS England and the Countess of Mar that there will be a surveillance review of the NICE guideline in early 2017, we shall be submitting this MEA ‘patient evidence’ to NICE.

NICE FoI correspondence:

www.meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-research-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/

We also believe that it will be important to accompany this ‘patient evidence’ on CBT, GET and Pacing with a survey of how the people with ME/CFS now view the PACE trial results.

Which is why we are asking about the PACE trial and NICE guideline on ME/CFS in this month’s MEA website survey…..

Dr Charles Shepherd
Hon Medical Adviser
ME Association

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