Parliament EDM 271 Urges NICE to Update Guideline on ME

UPDATE

On 20th September, NICE overturned the original proposal and announced it would review its guideline on ME. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come. We still need you to ask your MP to sign EDM (271) NICE Guideline on ME. We need to make sure that graded exercise therapy (GET) and Cognitive Behavioural Therapy (CBT) are removed from the guideline or at the very least contain warnings about this treatment.

BACKGROUND

In July, 2017, National Institute for Health and Care Excellence (NICE) proposed NOT to update their guideline for Myalgic Encephalomyelitis (CG53)
15,180 people signed an ME Association petition supporting the view that current guidelines were ‘not fit for purpose’
ME patient organisations and charities reacted by sending submissions to NICE unanimously urging a full review. Only 9 out of 39 organisations (none of which were patient organisations) agreed with the proposal NOT to update.
On 6th September, Stephen Timms tabled Early Day Motion (EDM) 271 on our behalf.

EARLY DAY MOTION FOR ME

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.

On 20th September, NICE overturned the original proposal and announced it would review its guideline. This is great news but means we need to double our efforts to make sure that the new guideline is robust enough to protect and help people with ME for generations to come.

CONTINUE TO ASK YOUR MP TO SIGN EDM 271!

We still need you to ask your MP to sign EDM (271) NICE Guideline on ME.
EDM 271 will remain open for MP’s to sign for the full parliamentary term (likely to be June/July 2018) NICE will be working on guideline CG53 for the next 2 years.
Our EDM has already achieved one of our goals but we need to make sure that graded exercise therapy (GET) and Cognitive Behavioural Therapy (CBT) are removed from the guideline or at the very least contain warnings about this treatment. Further signatures are required to:
1) Demonstrate to NICE the level of parliamentary interest on getting the guidelines right!
2) Focus attention on the problems of GET/CBT (as stated in the EDM and briefing)
3) Provide us with a list of supportive MP’s to campaign and work with in the future
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.

Facebook
Twitter
WhatsApp
Email

Latest News

DHSC released a new progress Report

DHSC has released an update on the progress of the work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue. This is dated from December 2022.You can read the full report using the link below: DHSC Information Bulletin Dec 22 FINAL MECFS updated

Read More »
Gold fireworks lighting up over a black background. The words, TOP HITS 2022 is in the center in white lettering. the words: #MEAction accomplished a lot last year is undernether with the #MEAction logo

Let’s Look at #MEAction’s Top Hits from 2022

As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished in a very busy and exciting 2022! There are so many wins to share, so we decided to narrow down the list to our TOP HITS! ——————- #MILLIONSMISSING 2022: * Bringing together the powerful Virtual #MillionsMissing

Read More »
A photo from Millions Missing Scotland of a group of 20 protestors outside the Scottish Parliament. They’re looking serious and holding signs that say Millions Missing, and a pledge signed by MSPs. Many are wearing red ME Action t-shirts. A yellow icon of a person is overlaid next to them with an arrow pointing to it and the words ‘Could it be your MSP?’ A red banner along the bottom says ‘Share your story and ask your MSPs to stand up for people with ME.’

Ask your MSPs to stand up for people with ME

Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and your MSPs should be there! The motion calls on the Scottish Parliament to recognise the outcomes and recommendations of the stakeholder report on ME, including education of healthcare professionals and development of specialist services. We’re pleased

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top