A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME who have been working together to input to the cross-government Delivery Plan on ME/CFS.
Urgent action is needed to ensure a strategic approach for research into ME/CFS and associated post-infectious illnesses, including Long Covid. There are an estimated 1.3 million people in the UK who experience ME/CFS or ME/CFS -like symptoms with post-exertional malaise, the hallmark symptom of ME/CFS.
Despite ME’s high prevalence, little is known about its causes and ultimate cure. Parallels have also recently been drawn between ME/CFS and Long Covid with some research indicating that at least 50% of people with long covid have symptoms that directly mirror ME/CFS.
The Grand Challenge
The grand challenge therefore is to urgently improve understanding of disease mechanisms and to find evidence-based diagnostic tests and treatments for the growing numbers of patients with ME/CFS and associated post infectious diseases. These strands must be run in parallel to best serve people with ME/CFS.
The proposed solution
We have worked together to develop a proposal to establish a national ME/CFS research consortium in line with UKRI’s 5-year strategic themes and 4 of the 5 NIHR Key Initiatives.
While ME/CFS is not a mental health illness, our platform proposal is based on the principles established in the MRC’s recent Mental Health Platform investment. It would comprise five hubs, funded over 5-years, coordinated by a single centre whose remit is to work in partnership with patients and stakeholders to develop and promote innovative solutions to building research capacity for patient benefit.
The new ME/CFS and Post-Infectious Disease research platform will adopt the successful collaborative model of the Mental Health Platform by bridging research silos, accelerating drug development, connecting academic research with industry and clinical care, using interdisciplinary methods (including Artificial Intelligence/Machine Learning), whilst performing open innovative research, sharing data, and accelerating new treatment options.
Letter from ME researchers to funders
Letter to MRC and NIHR leadership
Parliamentary briefing
About Us
Adrian Baldwin, member of ME Research Collaborative Patient Advisory Group (MERC PAG)
Prof Danny Altmann, Imperial College London
Annette Barclay, person with ME/CFS & James Lind Alliance ME/CFS PSP Steering Group member Helen Baxter, 25% ME Group
Monica Bolton, person with ME/CFS & James Lind Alliance ME/CFS PSP Steering Group member
Sonya Chowdhury, Chief Executive, Action for ME
Dr Nicola Clague-Baker, University of Liverpool
Dr Caroline Dalton, Sheffield Hallam University
Jonathan Davies, Trustee, ME Research UK
Rachel Ephgrave, member of ME Research Collaborative Patient Advisory Group (MERC PAG)
Prof Sir Stephen T Holgate CBE, Southampton General Hospital
Prof Douglas Kell, CBE, University of Liverpool
Prof Karl Morten, University of Oxford
Alan Mould, carer of person with ME/CFS & James Lind Alliance ME/CFS PSP member
Sean O’Neill, Father of Maeve Boothby O’Neill who died of ME
Prof Chris Ponting, University of Edinburgh
Prof David A Price, Cardiff University School of Medicine
Dr Charles Shepherd, ME Association
Kiri Stuart-Clarke, member of ME Research Collaborative Patient Advisory Group (MERC PAG)
Prof Sarah Tyson, University of Manchester
Opal Webster-Philp, member of ME Research Collaborative Patient Advisory Group (MERC PAG)
Dr Dmitry B. Veprintsev, University of Nottingham