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
- Norges ME-Forening, the Norwegian ME/CFS organisation, held a research conference on May 7-8. Speakers at the “Digging Deeper” conference included Carmen Scheibenbogen, David Systrom, Øystein Fluge, Michelle Bull, David Putrino, Karl Johan Tronstad, Brian Hughes and Rob Wüst. The recordings are available: https://youtube.com/@norgesme-forening-rogaland5631
- Invest in ME’s conference took place over five days, on May 26-30, and included meetings for researchers, clinicians, a workshop for early career researchers and a meeting of the European ME Research Group (EMERG), which includes ME/CFS researchers from across Europe. Conference speakers included Chris Armstrong, Maureen Hanson, Jonas Bergquist, Chris Ponting, Alain Moreau, & Nancy Klimas. https://investinme.org/meconferenceweek2025.shtml
- PolyBio Foundation, founded by Amy Proal and Michael van Elzakker, held a Symposium in May, during which researchers provided short 10-minute updates on their projects. More than 30 researchers participated in the symposium, including Resia Pretorius, Akiko Iwasaki, and David Putrino. A recording is available: https://youtu.be/EQLcZd6BvXY
- Charité – Universitätsmedizin Berlin and the ME/CFS Research Foundation organised the “International ME/CFS Conference 2025“ on May 12-13 in Berlin. The event was directed at medical professionals, researchers and interdisciplinary experts in the fields of medicine and biology. Speakers included Carmen Scheibenbogen, David Putrino, David Systrom, Uta Behrends, and Olaf Mella. Recordings are available: https://youtube.com/playlist?list=PLhSdRVaVtUx5uIfWs6j2YIxxsWTnbRTzb&si=zJJHOOy1wKKW95RD
Clinical Care & Support
- A property developer in Germany is planning to build a housing project specifically for people with severe ME/CFS who require 24 hour assistance. These apartments will be specially designed to meet the needs of the residents, with sound proofing, good ventilation and full blackout, no steps, and good temperature control. These apartments are intended for people currently living in nursing homes. https://sozialhummel.de/wohnprojekt-fuer-schwer-me-cfs-betroffene-in-neunkirchen-seelscheid-interessenten-gesucht/
Advocacy
- The Associated New Zealand ME Society (ANZMES) has been running a petition calling on the New Zealand government to stop reducing social security benefits for people who are hospitalised. Currently, people hospitalised for more than 13 weeks have their benefits reduced from NZD $480 to just NZD $56.58 per week, leaving severely ill ME/CFS patients requiring long term hospital care unable to afford essential items like medications. The petition is open to anyone around the world to sign.
https://our.actionstation.org.nz/petitions/fairness-for-the-hospitalised-stop-benefit-cuts-after-13-weeks - Maggie Boxey, who lives with ME/CFS, gave a TedX talk in California in April. In her presentation, titled “I am one of the Millions Missing”, Maggie speaks about life with ME/CFS and about feeling invisible since she became unwell.
https://youtu.be/JzKfi8LOMQU?si=1gMwqgpSAu-buKlj - Anil van der Zee, Dutch patient living with severe ME/CFS, has directed a new documentary, called “Doctors as Patients”. The documentary features five Dutch doctors who developed post-infection conditions like ME/CFS, long COVID or chronic Lyme disease, and asks them about their experience of becoming patients with chronic illnesses and how their experience impacted their views on medicine and the healthcare system. The documentary runs for one hour and is in Dutch, with English or Dutch subtitles.
https://youtu.be/J0ywwLIfH_w?si=QczrO28l0HqaI_GL - World ME Alliance posted a country-by-country run down of activities for ME/CFS Awareness Day on their website.
https://worldmealliance.org/2025/05/country-by-country-highlights-for-world-me-day-2025/ - The UK Press Awards “Campaign of the Year” was awarded to The Times’ reporting of the coronial inquest into the death of severe ME/CFS patient, Maeve Boothby-O’Neill, daughter of senior Times journalist Sean O’Neill. The coroner acknowledged the very influential role of The Times & O’Neill’s reporting, and the award judges praised “a compassionate and powerful piece of public service journalism”.
https://www.thepressawards.com/finalists/me-awareness-and-reform-8fz01