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.