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Transforming lives on World M.E. Day

May 12, 2022

Action for M.E. welcomes the Department of Health and Social Care’s pioneering statement on Myalgic Encephalomyelitis (M.E.) on the first ever World M.E. Day.

Ministers set out plans for a new cross-Government delivery plan on M.E. for England, aligning with other devolved nations of the UK. The statement, which was made to Parliament today by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.

It’s been backed by a pledge by Health Secretary Sajid Javid to “drive forward progress” and “improve experiences and outcomes for sufferers”.

The Government’s statement to parliament also welcomes the launch of the M.E./CFS Priority Setting Partnership (PSP) report Prioritise ME, which sets out the top ten M.E. research priorities identified entirely by people with M.E., carers and healthcare professionals. This initiative, led by Action for M.E. and facilitated by the James Lind Alliance completed a participatory process to identify the Top 10+ M.E./CFS research priorities to change the M.E./CFS research landscape in the UK and beyond.

Questions that Action for M.E. want addressed include whether there is a genetic element to the M.E., if a single test could be developed and whether existing drugs could be used to treat the condition.

The list of priority research areas, as well as downloadable and audio versions of the project report can be found at on the PSP website.

Health and Social Care Secretary Sajid Javid said:

“The UK is a world leader in research and Action for M.E.’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis (M.E.). M.E. can be an incredibly disabling condition and not enough is known about it – we must drive forward progress in this area to ensure those living with the condition can be better treated and supported. I am committed to improving the lives of people affected - later this year we will develop a delivery plan to understand how we can improve experiences and outcomes for sufferers.”

Welcoming the Department of Health and Social Care’s statement and launching the ten priorities, Sonya Chowdhury, Chief Executive of Action for M.E. said:

“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On the the first World M.E. Day, it is fantastic to see that this devastating and disability condition is being explicitly acknowledged by Government as priority. This announcement complements the work undertaken through our Priority Setting Partnership, where people of all ages with M.E. have identified their Top 10 list of priorities that would have most impact on their lives to shape future research.

The report has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard, and empower them to set the priorities for M.E. research themselves, and we look forward to working with Government on their action plan. Through greater partnership working we hope to able to better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.”