In a joint letter to Health Secretary Wes Streeting under a title “Concerns regarding ME/CFS Strategy in the Final Delivery Plan”, John Milne MP has questioned “the absence of strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan”.

John is lead signatory, joined by MP Jo Platt, All-Party Parliamentary Group on ME chair, plus his co-MPs and Huse of Lords members who are Champions for Action for ME.

Here is the text of the letter:

Dear Wes

Concerns regarding ME/CFS Strategy in the Final Delivery Plan

As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan – ME/CFS are debilitating and affect an estimated 1.3 million people in the UK.

Despite its scale and impact, ME remains severely underfunded and poorly understood. There are currently no diagnostic tests of effective treatments. Research activity is limited, fragmented, and lacks the coordination necessary to deliver meaningful progress. This is particularly troubling given the availability of valuable research assets such s the UK Biobank and DecodeME, and the clear overlap with the growing phenomenon of Long Covid. Evidence suggests that up to half of the people with Long Covid are experiencing symptoms that closely mirror those of ME.

The UK is rightly recognised for its world-leading life sciences sector and yet this strength has not been directed towards solving ME, which continues to leave millions without answers or hope. In 2017, ME was estimated to cost the UK economy £3.3 billions a year. Adjusted for inflation and revised prevalence estimates, that figure is now thought to exceed £20 billion annually, largely due to lost productivity and the pressures placed on carers and the health system.

We believe there is now a clear case for a national, coordinated approach to ME and post-Infectious disease research. A dedicated hub would help unlock scientific breakthroughs, attract long-term investment and ensure that parents, clinicians and researchers are working together to build a future with effective diagnosis

Will you agree to meet with Action for ME to discuss these concerns and explore how the Department can support a more strategic response?

Yours sincerely,
John Milne MP
Member of Parliament for Horsham

Graeme Downie MP
Member of Parliament for Dunfermline and Dollar

Monica Harding MP
Member of Parliament for Esher and Walton

Max Wilkinson MP
Member of Parliament for Cheltenham

Steve Race MP
Member of Parliament for Exeter

Wendy Chamberlain MP
Member of Parliament for North East Fife

Alison Hume MP
Member of Parliament for Scarborough and Whitby

John McDonnell MP
Member of Parliament for Hayes and Harlington

Tessa Munt MP
Member of Parliament for Wells

Baroness Scott of Needham Market
Member of the House of Lords

The Rt Hon, The Lord Bethell
Member of the House of Lords
Hat-tip: The ME Association website.