ME Action blog post, 9 September 2017: Ask your MP to sign our EDM


The National Institute for Health and Care Excellence (NICE) are currently deciding whether to change their guidelines on ME. It is a pivotal moment for people with ME in the UK and we are taking nothing for granted.

ME charities and stakeholders have unanimously told NICE that guideline (CG53) for Myalgic Encephalomyelitis needs an immediate, full review.

15,180 people signed an ME Association petition supporting the view that current guidelines were ‘not fit for purpose’

We need your help for parliament to recognise the strength of feeling on this.

An Early Day Motion (EDM) is like a parliamentary petition to demonstrate the level of parliamentary support for a particular cause or point of view.

Stephen Timms MP has tabled the following EDM (271) on our behalf:

That this house welcomes NICE’s consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue Syndrome/ME (CG53); notes that ME is a serious, debilitating, chronic health condition affecting about 250,000 people in the UK, and is concerned that about half of the patients asked in a number of surveys reported adverse effects on their health from Graded Exercise Therapy (GET) which is recommended by NICE;

notes recent biomedical research indicating an abnormal physiological response to exercise in ME patients, and that the US Centre for Disease Control no longer recommends GET for ME; notes also the unanimous call from consultation stakeholders, and a petition of 15,180 patients, for NICE to update its guidelines on ME; and urges NICE to review CG53 and to consider patient experience and recent international scientific evidence in its assessment of the merits of GET for treating ME.

We urgently need you to ask your MP to sign EDM (271) NICE Guideline on ME.

We want as many MP’s as possible to sign before NICE make their decision in October. Find out how to ask them on the ME Action website



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