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Dear [Name of MP],
Re: Early Day Motion (217) NICE guideline on ME
I have had Myalgic Encephalomyelitis (ME) since [YearSick]. This means Current NHS guidelines recommend a treatment called Graded Exercise Therapy (GET) yet almost half of patients surveyed report a deterioration of symptoms following GET.
However, NICE were initially proposing not to update their current guideline on ME. This caused shock waves throughout the ME community. ME patient organisation stakeholders sent unanimous submissions asking NICE to reconsider. This was supported by a petition of over 15,000 (in under 2 weeks) stating current guidelines are not fit for purpose. On 20 September NICE announced it would be reconsidering its recommendations to ‘update’ and ‘modify’ them. We don’t yet know whether those recommendations will include changing its advice on GET, either stopping it as a treatment or giving sufficient warning of the potential harms, so please could you add your support by signing EDM 271 which reads:
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.
Please see the parliamentary briefing by #MEAction Network UK, available at http://bit.ly/NICE-CG53
I would also like to let you know of a lunchtime reception in the Speaker’s State Rooms on 24th October. It includes an opportunity to see an edited version of the award winning film, Unrest. This was directed by Jennifer Brea, who has ME. It shows the reality of living with ME. I would like to invite you to attend. Please RSVP to firstname.lastname@example.org to confirm your invitation.
Thank you for your time and interest,
[YourName], #MEAction volunteer