M.E. Ministerial Statement on World M.E. Day

 I am sending this important news to you on behalf of our CEO, Sonya Chowdhury, who is currently travelling overseas.

I wanted to inform you that the Department of Health and Social Care have today made a pioneering ministerial statement on Myalgic Encephalomyelitis on the first ever World M.E. Day.

Finally this devastating and disabling condition is being explicitly acknowledged by Government as a priority.

The statement sets out the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. This will begin with the Secretary of State, Sajid Javid co-chairing a roundtable with the Department’s Chief Scientific Adviser to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next.

The statement, which you can see here, was made in the Lords today.

Rt Hon Sajid Javid MP, Secretary of State for Health and Social Care, has made the following comment:

“The UK is a world leader in research and Action for ME’s priorities lay out clear next steps in learning more about Myalgic Encephalomyelitis. 

“ME 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.”

We are delighted that this coincides with the launch today of the Priority Setting Partnership (PSP) report: Prioritise ME. Action for M.E. were funded to lead the PSP and, facilitated by the James Lind Alliance, people of all ages with M.E. have been empowered to set the priorities for M.E. research. They have identified their Top 10 list of priorities that would have biggest impact on their lives to shape future research. It has been a powerful opportunity for the voices and lived experiences of children and adults with M.E. to be heard.

The report is supported by the Secretary of State for Health and Social Care:

“I welcome the publication of this Priority Setting Partnership which sets out the Top 10+ research priorities for ME. The Government recognises that ME is an under-researched area and pledges to support research funders and the academic community to respond to this independent report”

For the first World M.E. Day to signify such change for people with M.E. is more than we could have hoped for. Action for M.E. look forward to working with the Government on their Action Plan.

Through greater partnership working we will better understand this debilitating disease, with the aim of finding effective treatments and ultimately a cure.

Thank you for your continued support. Please do get in touch if you would like any further information.