United Kingdom News

Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.

#MEAction

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

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.”

Read More »
#MEAction

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

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

Read More »
#MEAction

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

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

Read More »
#MEAction

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

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

Read More »
#MEAction

Fury as NICE cancels publication of finalised ME/CFS guideline

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

Read More »
#MEAction

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

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

Read More »
Sian Leary

TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS

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

Read More »
#MEAction

Global media tells the story of the #Millionsmissing

We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection.   In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.

Read More »
Scroll to Top