Keep building momentum in Parliament for NICE review

Stephen Timms MP has tabled an EDM (Early Day Motion) in Parliament on behalf of #MEAction urging NICE (The National Institute for Health and Care Excellence) to review its guideline on ME.
What is an Early Day Motion?
EDM’s are formal motions submitted for debate in the House of Commons. Although these are rarely debated, EDMs allow MPs to draw attention to a specific event or cause. MPs register their support by signing individual motions, much like a petition.
Why is this so important?
When NICE proposed not to update their guideline for ME (CG53) the shock waves galvanised the ME community into action. ME charities and patient organisations submitted evidence to NICE unanimously urging for a full and urgent review. Over 15,000 patients supported this view in an ME Association petition
#MEAction has been talking to MP’s on why a full revision is so urgently needed and were delighted when Stephen Timms agreed to table our EDM (271).
With so much support for a full review from charities, individuals and now parliament, the pressure is mounting on NICE. It’s important we get as much support from MP’s as we possibly can.
Our call to Action

  • Thank you to those who have already contacted your MP. It is resonating well with MP’s. In less than a week, 22 MP’s from across eight political parties have already signed EDM 271 (at time of writing):
Name Party Constituency Date Signed
Bruce, Fiona Conservative Party Congleton 13.09.2017
Cowan, Ronnie Scottish National Party Inverclyde 13.09.2017
Cunningham, Jim Labour Party Coventry South 11.09.2017
Davey, Edward Liberal Democrats Kingston and Surbiton 12.09.2017
Donaldson, Jeffrey Democratic Unionist Party Lagan Valley 13.09.2017
Duffield, Rosie Labour Party Canterbury 12.09.2017
Edwards, Jonathan Plaid Cymru Carmarthen East and Dinefwr 12.09.2017
Godsiff, Roger Labour Party Birmingham Hall Green 13.09.2017
Hermon, Lady INDEPENDENT North Down 12.09.2017
Howarth, George Labour Party Knowsley 13.09.2017
Lefroy, Jeremy Conservative Party Stafford 11.09.2017
Lucas, Caroline Green Party Brighton Pavilion 12.09.2017
Main, Anne Conservative Party St Albans 13.09.2017
Monaghan, Carol Scottish National Party Glasgow North West 13.09.2017
Moran, Layla Liberal Democrats Oxford West and Abingdon 11.09.2017
O’Hara, Brendan Scottish National Party Argyll and Bute 13.09.2017
Owen, Albert Labour Party Ynys Môn 11.09.2017
Shannon, Jim Democratic Unionist Party Strangford 07.09.2017
Simpson, David Democratic Unionist Party Upper Bann 12.09.2017
Sobel, Alex Labour Party Leeds North West 12.09.2017
Stephens, Christopher Scottish National Party Glasgow South West 12.09.2017
Timms, Stephen Labour Party

Now that  we’re gaining the attention of MP’s we must maximise on it. MP’s are far more likely to sign if they understand the scale of the problem in their own constituency.  They need to know how many of their constituents this affects  but also the depth and breadth of the problem with current NHS treatment and its consequences.
What can I do?
If your MP has already signed EDM 271 – thank her/him and say why this is important to you.
If your MP isn’t listed, then do urge her/him to sign. New signatures are updated daily (Click here for the current list)
(No further updates are expected to be displayed until the next sitting day of Parliament on 9th October. Submissions can still be made.)
[NB Government ministers and PPS’s are unable to sign EDM’s but you can still alert them to it alongside your own story and our parliamentary briefing.] See our easy guide on how to contact your MP including a template letter
We want MP’s to sign our EDM but also to fully understand the ongoing problems people with ME face so please do share your own story and our parliamentary briefing
What will this achieve ?
We want NICE to be aware that  this is  a huge  area of concern for the ME community and that MP’s are aware and backing us on this. The more the better!
We want  MP’s well  informed of the dangers and consequences of GET/CBT . Regardless of NICE’s decision (expected October 2017) we are anticipating having to campaign further. We already know we have support. There is a lot that needs putting right when it comes to the understanding, care and management of  people with ME (and their families). The signatures on the EDM gives us a good list of MP’s to start with!
October also sees the screening of Unrest in parliament.There has probably never been a more pivotal time for the ME community in the UK to be noticed. Lets make sure that the opportunity isn’t wasted!



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A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

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