A powerful Southampton connection is helping to lead the future of research into the mystery illness M.E. which for years has been cutting a swathe through the lives of about 250,000 children and adults in the UK, and millions more worldwide.
The unique story of the meeting of minds that linked a university junior manager 30 years ago to a university don who went on to become one of Britain’s most eminent science researchers is told in a book just published by the Hampshire-based ME/CFS Alliance Think Tank.
To mark ME Awareness Week, former Southampton University training manager Opal Webster-Philp – whose career was wiped out by M.E. in 1991 – and co-author Nicola McDonald tell how Opal’s meeting with a clinician and scientist called Stephen Holgate led eventually to the setting up of a collaborative in 2012 that is now actively working to crack the puzzle that is M.E. – otherwise known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).
That scientist is now Professor Sir Stephen Holgate, Medical Research Council Clinical Professor of Immunopharmacology at Southampton, knighted last year for his services to medical research, and outgoing Chairman of the CFS/ME Research Collaborative (CMRC), formed nine years ago.
Opal Webster-Philp had to see up to 15 specialists before getting to grips with her M.E., and then persuading Professor Holgate to chair a conference on M.E. in Southampton in 2008. The main take-away from the conference was agreement that dialogue, not confrontation, about the controversial illness should be the touchstone for all future action.
It is now nine years since the founding of the Research Collaborative which stages an annual conference, and very successfully attracts new scientists and researchers into the study of M.E.
Today, the CMRC and like-minded bodies are leading the charge to effect a sea change in the way that new M.E. research projects are being put together – in which doctors and scientists are working together, collaborating, working in partnership with their patients, and, at last, putting patients at the centre of their decision-making.
As a testament to this approach, their work has led to the world’s biggest genetic study into the illness, the £3.2million Decode-ME study, being launched in the UK later this year. Well over 20,00 patients have volunteered to take part in it so far. It is possible that the results of this project could show a link with Long Covid.
“The approach is changing a lot of old dysfunctional thinking about M.E. It’s opening up the possibility that we might find good, effective diagnosis and treatments in the very near future”, said Opal.
The hard plod behind the successes is detailed in the Think Tank’s new book, entitled “The History of ME/CFS, the Evolution and the Role of the CMRC (A Patient’s Perspective)”.
Printed copies as well as a downloadable version are available for a donation here