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

November 1, 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

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

  1. It doesn’t take a rocket scientist to understand that the long-standing and determined promotion of GET/CBT has huge links to the interests of the DWP, private medical insurance companies and indeed a cost-cutting NHS. We can assume the proposed government Green Paper on further disability “reform” will be along the familiar old lines. They have already trotted the “work is good for you” phrase (doesn’t really help those lying in darkened rooms unable to comb their hair or wash). The following blog is very interesting and salient, debunking the myth that it is the actual state of being in work that promotes health, rather, the author states:

    “there, to my knowledge, has been no study that tested the hypothesis that employment improves health. What the evidence does say is that the consequences of unemployment — societal isolation, poverty and so on — are associated with poorer health”

    https://medium.com/@jonathanhume/work-wont-set-us-free-1ef781eb9e1f#.xg24md6u6.

  2. Great comments and blog link Findlow! I’m sure governments would be quite happy to legislate illness out of existence – in spite of the reality in front of them. Amazing how stupid (& inhuman) the human mind can be.

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