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.
On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid, announced the Government’s intention to develop a cross-Government Delivery Plan on ME/CFS for England. This intention was published in a Written Ministerial Statement laid in Parliament. Development of the plan will build on the recently published
#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link will be available on #MEAction’s website until Friday, July 29th. We encourage everyone to thoughtfully consider each question, fill out their responses, and submit the survey by the due date. The survey consists of 12 questions
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development. What is the plan?The government plans
UPDATE: The research team have let us know that they’ve received a huge response to this request and they now have the information they need. They’ll be in touch with people individually if they are eligible to participate in the study. If you got involved, thanks for your support! Researchers at the University of the
Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership. Through three stages of participation, this process is aiming to define the top ten research priorities for people affected by this disease. The process now has just one more step – and you could be part of it. These
Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions. Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign and shared their thanks in our work to educate the medical establishment about the new guideline. This is cause for celebration! This is the start of a real change that has begun in how we are
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline fast approaching this is your last chance to join them and vote. Deadline Monday 13th December 5pm Vote now This process gives greater voice to people affected by ME/CFS to decide the direction of ME/CFS research
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the
