CONTINUE TO ASK YOUR MP TO SIGN THE EDM!
We still need you to ask your MP to sign EDM (271) NICE Guideline on ME.
For further information on the background behind EDM 271 read more here.
Please continue to urge your MP to sign EDM 271, share your story about ME (particularly your experience of GET) and pass on our parliamentary briefing.*
The sample letter also includes an invitation to the screening of Unrest in parliament. There’s never been a better time to make sure your MP is fully briefed on on what is ME and the consequences of current treatment! Make sure your MP is part of the change!
Step 1: Enter a few details below and click the "generate" button, a personalised message will be automatically copied to your clipboard
, and you will be taken to the website "Write to them" allowing you to email your MP directly.
Step 2: Paste your message into the box, replacing the current text (feel free to change this however you feel is appropriate but please be polite and avoid any temptation of introducing party politics!)
Step 3: Let us know if you have had a positive response from your MP by contacting firstname.lastname@example.org
Note: The information entered here is to create a personalised message only. We do not save any of this information.
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 email@example.com to confirm your invitation.
Thank you for your time and interest,
[YourName], #MEAction volunteer
*Note: If possible, consider making an appointment to see your MP and give a hard copy of the briefing. It is far more likely to be read if you are sitting in front of them! You don’t need to be an expert, but we want MP’s to understand the impact the guidelines have on individuals – share your own story. Personal connection will have a lot more impact (Maybe a friend or relative could attend for you?)