United Kingdom Archives

“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline

October 19, 2021 17 Comments

After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

An update on the NICE roundtable from #MEAction UK

October 8, 2021 1 Comment

#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.

NICE announces roundtable event to ensure implementation of ME/CFS guideline

August 27, 2021 No Comments

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Forward-ME : RESPONSE TO ‘PAUSE’ IN NEW NICE GUIDELINES

August 20, 2021 No Comments

As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group regarding this week’s pause by NICE of new Guideline publication. ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME On Behalf

Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

August 19, 2021 3 Comments

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form. Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

Fury as NICE cancels publication of finalised ME/CFS guideline

August 17, 2021 2 Comments

There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their

Cancelled: Chat to NICE ME/CFS guideline committee members

August 11, 2021 No Comments

On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.

Connecting Black People with ME and/or long Covid in the UK

July 16, 2021 No Comments

Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the

TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

June 18, 2021 1 Comment

Help prioritise ME/CFS research by filling in this survey A major UK project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your responses must be in by Monday 5th July 2021. Find out more

#MEAction Discussions with REGAIN Trial Clinicians Led to Staff Training on PEM

June 11, 2021 No Comments

Earlier in 2021, concerns were raised by people with ME about the REGAIN clinical trial and whether there was a risk to people suffering from post-viral symptoms, particularly post-exertional malaise. The REGAIN study aims to find out which of two treatments is better for helping people recover after being in hospital with Covid 19 –

Category: United Kingdom