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ME/CFS Delivery Plan

ME/CFS Delivery Plan

On 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, aligning with other devolved nations of the UK. This intention was published in a Written Ministerial Statement laid in Parliament.

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

“For too long people with M.E. have struggled to get their condition diagnosed, understood and acknowledged. On 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.”

The development of the plan will build on the Rethinking ME report by the All-Party Parliamentary Group on M.E./CFS published in May 2022, the guidance from the National Institute for Health and Care Excellence (NICE) updated in October 2022, and the top ten (plus) research priorities for M.E./CFS published in May 2022.

The Working Groups have been meeting regularly since June 2022 to discuss current problems, a vision for the future and proposals for action. These will be developed into a draft Delivery Plan, which is intended to be released later in 2022 to support wider engagement on the plan and proposals for action. Everyone will have an opportunity to share their experience and give their views on the draft Delivery Plan at this point.

All the evidence will be considered before the final Delivery Plan.

Follow this page for the latest updates.

Latest updates

November 6, 2023

The latest update provides information about work to develop the Final Delivery Plan on ME/CFS.

October 04, 2023

Approximately 3,500 responses have been collected in response to the Interim Delivery Plan on ME/CFS, with more expected from those completing the easy read version later this month.

12 weeks will be required for the comprehensive review of these responses. There will be active engagement with various stakeholder groups before the final report is published.

August 09, 2023

The Government released an interim delivery plan on ME/CFS. The Department of Health and Social Care launched an 8-week consultation to gather a range of views from the ME/CFS community on the proposed actions in the interim delivery plan to build a picture of how far it addresses the issues most important to them and help us to identify where further action may be needed.

The Government welcomed input from people with M.E., families and carers, healthcare and other professionals, clinical academics and researchers.

Learn more about this here.

December 21, 2022

The December update provides a summary of the activity underway since 20 September to develop the draft cross-government Delivery Plan on ME/CFS.

September 20, 2022

The September update provides a summary of the meetings held to date to develop proposed content for the Delivery Plan on ME/CFS.

The DHSC does not have its own website to host updates on this, so has asked Action for M.E. and other stakeholders to do so.

July 05, 2022

On 5 July, the Secretary of State for Health and Social Care Sajid Javid resigned from his role, and we welcomed the new Secretary of State for Health and Social Care Steve Barclay.

Since the release of the written ministerial statement in May, meetings have been held covering patient experience, education, training and research into the cause and treatment of M.E./CFS including a roundtable that Sonya attended at the end of June.

Read more about this here.

May 12, 2022

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

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, made by Health Minister Lord Kamall, is the first time that Government has made an explicit and dedicated statement on M.E.

Read more about this here.