ME/CFS Alliance - Supporting Biomedical Solutions for ME, CFS, FM and Related Conditions

The in-person meeting served to reaffirm our common goals, how we go forward together. It
was important that international researchers attended, either in-person or online, as this
further strengthened our connections beyond the UK. And, it was important to convey that
scientific momentum is still gathering pace.

Professor Chris Ponting – Chair of Medical Bioinformatics, University of Edinburgh

“Stronger Together” MECFS Alliance Symposium Update

It is hard to believe that more than 3 weeks have passed since our ME/CFS Alliance symposium. Many of us on the team are still recovering from the efforts involved in bringing the event together — particularly those of us with more than an academic interest in the condition — so please forgive the slight delay in sending updates.

Thank you again for being with us on the day. Your presence helped make the symposium the energising and thoughtful gathering that it was.

We would very much like to maintain the momentum that emerged from the discussions and to think together about how it might be carried forward through continued collaboration.

If you have a moment, we would be most grateful if you might share a sentence or two about what felt most significant or memorable to you, and any thoughts you may have on how we might build on the opportunities that arose. Please send these to info@mecfsalliance.org.uk

The filming from the day is currently being edited, and we hope to upload the final videos to the ME/CFS Alliance website in the near future, so that the sessions can be streamed and revisited.

We were also very pleased to share the coverage from the BBC, both the video from BBC South Today and the link to their article Link to BBC Article

With our very best wishes,

Opal and the MECFS Alliance Team

What stood out most for me was the quality of the discussions and the mix of people in the
room. It was particularly valuable to connect with new colleagues while also strengthening a
number of existing collaborations. Bringing together researchers, clinicians, and community
representatives in this way felt necessary, and it gave a sense that the field is starting to
align around shared priorities and more coordinated approaches.

Dr Rob Wüst at Vrije Universiteit Amsterdam

The History of ME/CFS the Evolution and the Role of the CMRC - A Patient's Perspective

The History of ME/CFS and the Evolution and Role of the CMRC (A Patient’s Perspective)

Order a Printed Version or

Download Now

Poorly understood & often misdiagnosed

Although visibly ME/CFS sufferers may appear normal they are in fact affected by a seriously disabling illness which is poorly understood & often misdiagnosed. The illness affects the autonomic, neurological, endocrine and immune systems and cell energy production. The hallmark symptom is post exertion malaise.

Find out more

A woman suffering from ME, stood alone in a crowd

Working with the CFS/ME Research Collaborative and other stakeholders

The Alliance focuses on ways of improving the quality of life for people living with the disease ME/CFS. It is based on the belief that to achieve the best outcome for people with the lived experience is to working is to work in partnership with university professors, researchers and medical professionals, other stakeholders working towards the same goals to help build a mechanism that supports co-operation, collaboration and aids research that might lead to solutions.