ME Research UK announces sponsorship of IACFS/ME Conference Poster Competition
ME Research UK is proud to announce sponsorship of the IACFS/ME virtual poster competition at the forthcoming Oct 2025 IACFS/ME Conference. ME Research UK views sponsorship at the world’s premier ME/CFS conference as a fitting way to mark a quarter century of vital funding for research with the poster competition helping to equip the next generation of researchers with the skills they need to succeed.
News coverage: ME Research UK-funded prevalence study
A new study from Gemma Samms, PhD-level researcher funded by ME Research UK, and her supervisor Professor Chris Ponting, DecodeME study lead, estimates that approximately 404,000 people in the UK are living with ME/CFS. They worked out this figure using prevalence rates from England and extrapolating them to the entire UK population of 68.3 million.
Conducted at the University of Edinburgh, the study was published last Monday and has since received widespread media coverage.
Scottish Parliament Motion to mark International ME Awareness Day
To raise awareness of ME among politicians at Holyrood ahead of International ME Awareness Day, Liz Smith MSP (who represents ME Research UK’s Perth base as regional list MSP for Mid Scotland and Fife), has lodged a Motion at the Scottish Parliament. The Motion also marks ME Research UK’s 25th anniversary by highlighting our work in the past quarter century.
Research hub proposal championed by ME charities, academics and researchers
A new research hub proposal has been championed by ME Research UK, Action for ME, and the ME Association, based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME/CFS who have been working together to input to the cross-government Delivery Plan on ME/CFS.
Articles
Misdiagnosis of ME/CFS and long COVID
Many people with ME/CFS or long COVID face the frustration of being misdiagnosed, often with conditions like anxiety or depression, leading to delays in proper care, missed opportunities for effective management, and worsening symptoms. Misdiagnosis can also occur in the opposite direction; for example, as reported by The Independent, 33-year-old Olivia Knowles was initially diagnosed with long COVID but was later found to have acute myeloid leukaemia, a form of blood cancer.
Improving ME/CFS population sampling
Research in Norway has found that using population health records may significantly underestimate the number of people with ME/CFS, especially amongst underserved groups.
Why EBV infection does not always lead to ME/CFS
Approximately 30% of ME/CFS cases associated with an infection are thought to be due to infectious mononucleosis – glandular fever, caused by the Epstein–Barr virus (EBV) – but not everyone who has an EBV infection develops ME/CFS. A recent study investigated why this is the case. We have also published an overview of previous EBV-related articles.
Other topics explored in April include potential hyperresponsive immune cells in ME/CFS, a screening test for ME/CFS, and NINDS-supported repository of biological samples.
Breakthrough magazine
The Spring 2025 issue of Breakthrough magazine is now available online. This issue includes a look at a newly funded research project using MRI to track changes in the brain, an article from Cort Johnson on finding a biomarker for ME/CFS, an interview with Phd-level researcher Jente Van Campenhout from Vrije Universiteit Brussel, and much more.
Blue Sunday
Anna Redshaw’s ‘Blue Sunday’ Tea Party for M.E. in aid of various ME charities (including ME Research UK) is in less than 2 weeks on Sunday 18th May 2025. Since its launch in 2013, the initiative has raised over £140,000 for charities. Read more about how to take part and donate. As the perfect accompaniment tickets are available for a virtual concert held by Isaac, who has a sister with Severe ME, in aid of ME Research UK and Smile for ME.
Movement for Good – nominate ME Research UK
The Benefact Group’s Health & Wellbeing Special Draw is now open. £5000 will be donated to each of 10 nominated charities. You can nominate as many charities as you like – it’s one nomination per charity per person. The campaign ends just before midnight this Sunday – 4th May 2025.
To nominate ME Research UK, type in ‘ME Research UK’ and complete your details – it’s free and easy to do!
