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
- University Hospital Regensburg (UKR) and the University Hospital Giessen and Marburg (UKGM) is undertaking a collaborative ME/CFS research project. Dubbed “Miracle” the project will run for three years and will study features of the condition which haven’t received much attention. The project has received €2.5m in government funding and will run for three years. https://nachrichten.idw-online.de/2025/01/22/ukr-projekt-miracle-erforscht-die-unsichtbare-last-me-cfs?groupcolor=3
- The ME/CFS research program at Columbia University in the US has been shut down following the US government’s cuts to the university’s funding.
https://www.statnews.com/2025/03/19/myalgic-encephalomyelitis-chronic-fatigue-syndrome-columbia-program-shutdown/
Clinical Care
- NHS England has published the second of three ME/CFS education modules for health professionals. This module provides guidance for community-based health professionals. The final module, still to be released, will focus on severe and very severe ME/CFS.
https://meassociation.org.uk/2025/01/nhs-england-launches-the-second-e-learning-module-on-me-cfs/ - Solve ME/CFS Initiative and Bateman Horne Center co-hosted a series of four webinars on severe ME/CFS between October 2024 and February 2025. The topics of the webinars were (1) caregiving, (2) legal planning, (3) medical care and (4) research. The recordings are available on YouTube: https://youtube.com/playlist?list=PLbO5abv0daLWxpsDsRrOYq7PGxiHD0P6t&si=hBLaUzBwTgQtGOP8
- The Long COVID Initiative has published a community resource for people experiencing Infection-Associated Chronic Conditions (IACC). The guide was developed by advocacy groups, medical experts and community organisations, and provides information for patients, caregivers, clinicians and researchers.
https://solvecfs.org/the-infection-associated-chronic-conditions-initiatives-iacci-community-resource-guide-is-now-available/ - The Swedish Agency for Health and Care Analysis is set to undertake a process to map how other countries provide healthcare to people with long COVID and related conditions, with a view to improving the healthcare of Swedish patients. Please note this article is only available in Swedish.
https://www.regeringen.se/pressmeddelanden/2025/03/ny-kartlaggning-ska-starka-varden-for-patienter-med-svardiagnostiserade-tillstand/
Advocacy
- The Cochrane Group announced in December that, more than five years after they promised to update the Exercise for Chronic Fatigue Syndrome review, they would no longer update the review. The announcement has been met with strong condemnation from advocates and ME/CFS organisations around the world. Hilda Bastian, leader of the Independent Advisory Group (IAG) established by Cochrane to provide advice on the review, published an open letter to Cochrane leadership expressing the IAG’s views about the process being cancelled. https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/
Science for ME’s petition calling for the existing Cochrane review (which recommends GET) has more than 15,000 signatures and is still open: https://www.change.org/p/cochrane-withdraw-the-harmful-2019-2024-exercise-therapy-for-cfs-review - The YouTube channel SciShow, which has more than 8 millions subscribers, published an 8 minute video explaining why exercise makes people with ME/CFS worse. The video was published in February and already has more than 200,000 views. https://youtu.be/wxSwYUennBA?si=xQSgguBhSuWMqwd_
- #MEAction and the Patient-Led Research Collaborative published a letter calling on US Secretary of Health, Robert F Kennedy Jr, to reinstate the Long COVID Advisory Committee, which was recently disbanded. https://www.meaction.net/2025/03/06/press-release-advocates-urge-administration-to-reinstate-long-covid-advisory-committee/
- A new documentary, “Chronically ill, chronically ignored” was released in Germany. The film is the work of film director Sibylle Dahrendorf, who is bedbound with ME/CFS, and her co-director Daniela Schmidt-Langels. The film “uncovers the serious ignorance in dealing with ME/CFS and other multisystemic diseases and is at the same time a powerful plea for a necessary rethink in politics, society and science.” https://www.thecanary.co/global/world-analysis/2025/02/17/chronically-ill-chronically-ignored/
