Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months.
Research funding & conferences
- The Sequence ME & Long COVID Study (the follow up to the Decode ME Study) has received £4.75m (approximately AUD9m) in government funding to continue studying the genome of people with ME/CFS and long COVID.
https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project - ME/CFS Research Foundation’s International ME/CFS Research Conference took place on 8 & 9 May in Germany. Speakers included Chris Armstrong, Carmen Scheibenbogen, Øystein Fluge, Chris Ponting, Alain Moreau, Luis Nacul, David Putrino. Recordings of the presentations are available online. Presentations run for 5-20 mins.
https://youtube.com/@mecfsresearchfoundation?si=o8LRnSow7qc_FFMU - Solve ME/CFS Initiative held a webinar in April with Carmen Scheibenbogen on the use of GLP-1 weightloss drugs as potential treatments for ME/CFS.
https://youtu.be/v_c3wSmmJeA?si=MFUqRIMUfWioeZ5A - The PolyBio Foundation held its Spring Symposium in May. Speakers included Amy Proal, Michael van Elzakker, Resia Pretorius, David Putrino. A recording of the Symposium is available online.
https://youtu.be/tD5gWVEjudQ?si=xZdxxz0H-F_hGmO3 - The UK PRIME project (Building Infrastructure for Patients, Researchers and Industry for ME/CFS) held a webinar on the similarities and differences between ME/CFS and long COVID in April. A recording is available.
https://youtu.be/NMlMj7ordK8?si=z9VE0rW712Ig6ZPo
Clinical Care & Support
- Dr Nicola Clague-Bake and Dr Michelle Bull from Physios for ME published an article for physiotherapists titled “Do no harm: supporting people with ME/CFS”. The article explores how can physiotherapists provide effective care, while ensuring patients with ME/CFS feel safe and supported.
https://www.csp.org.uk/frontline/article/do-no-harm-supporting-people-mecfs - The UK ME Association has developed a new guide for carers providing support to people living with severe or very severe ME/CFS.
https://meassociation.org.uk/literature/items/a-guide-for-carers/
Advocacy
- The World ME Alliance’s focus for World ME Day was medical education. With the hashtag #EducateME, they encouraged people to share why medical education is important. They also launched a new Education Hub on their website.
https://worldmealliance.org/medical-education-hub/ - #LiegendDemo (lying down demonstrations) took place across Germany as part of ME/CFS Awareness Day. Participants were lying on the ground in public spaces to symbolise those who cannot leave their beds or homes due to ME/CFS.
https://www.merkur.de/bayern/me-cfs-protest-liegende-demos-in-bayerischen-staedten-94298383.html - ÖG ME/CFS (Austrian ME/CFS Society) held a protest for ME/CFS Awareness Day. They were calling on the Austrian government to develop specialised, interdisciplinary care and treatment structures, reliable social security and consistent biomedical research.
https://youtu.be/fX98AvppWuY?si=HQ_qejFndDuiNSsk - #MEAction’s #MillionsMissing protest this year focussed on Medical Frailty and targeted the US Department of Health & Human Services, seeking to protect access to Medicaid for Americans with ME/CFS and long COVID.
https://www.meaction.net/post/we-made-real-progress-at-millionsmissing-here-s-what-s-next - Solve ME/CFS Initiative’s annual Advocacy Week focussed especially on medical education, with a long-term goal of getting ME/CFS-related questions onto medical licensing exams, ensuring that medical schools will teach their students about the condition.
https://solvecfs.org/advocacy-week-2026-what-we-did-what-comes-next-and-how-we-win/ - The Associated New Zealand ME Society (ANZMES) marked World ME Day with a “Take ME Seriously” campaign, calling on improved clinical care for people living with ME/CFS in New Zealand.
https://youtu.be/e5hDZENnFyE?si=D28iexDBbPKPZRR_ - The UK Long COVID Advocacy group published an open letter to the UK’s Royal College of Psychiatrists calling on them to reject the psychosocial framing of ME/CFS and long COVID at their 2026 Congress in June.
https://www.longcovidadvoc.com/post/open-letter-urges-royal-college-of-psychiatrists-to-align-with-current-evidence - The Dutch Health Council has released its report on long COVID. The Council recognised the overlap between long COVID and other post-acute infection syndromes and called for these conditions to be recognised as major health problems and taken seriously.
https://www.dutchnews.nl/2026/05/dutch-health-council-urges-government-action-on-long-covid/
