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
- In the UK, Action for ME, ME Research UK and ME Association have launched a campaign to establish a Post-Infectious Disease Research Platform in a bid to accelerate progress on the UK’s identified ME/CFS research priorities. It was identified that there are only 10 ME/CFS research groups in the UK. To make real progress, they propose that a national ME/CFS research consortium be established to encourage synergy and collaboration.
https://psp-me.co.uk/wp-content/uploads/2025/04/A-Proposal-for-an-MECSF-post-infectious-National-Hub.pdf - ZonMw (the Dutch national organisation for funding health research) has announced €3.5m to fund clinical trials into repurposed medications for ME/CFS, focussing on existing medications which could be potential treatments for ME/CFS.
https://www.zonmw.nl/en/subsidy/promising-medicines-mecfs-call-drug-repurposing - The German ME/CFS Research Foundation has launched its 2026 research funding program, with €2m available for new research projects. The majority of the funding (€1.5m) has been allocated to clinical trial research, with €0.5m for basic research.
https://mecfs-research.org/en/researchfunding2026/ - The US Centers for Disease Control and Prevention (CDC) is seeking public comment on a proposed data collection project titled School-Based Active Surveillance (SBAS) of ME/CFS in Schoolchildren. The project aims to help symptom burden in young people with ME/CFS and to inform future healthcare policy.
https://www.federalregister.gov/documents/2026/02/11/2026-02654/proposed-data-collection-submitted-for-public-comment-and-recommendations - The research group behind the DecodeME genome study is seeking £20m for the follow up study, Sequence ME and long COVID. This study will be the largest long-read whole genome study of any disease.
https://www.actionforme.org.uk/sequence-me-long-covid-launches/
Clinical Care & Support
- A draft clinical guideline for long term fatigue, including ME/CFS, have been published in Norway and is open for public consultation. The guideline was developed by the Norwegian Directorate of Health, and has some positives, including a recommendation that all therapists must take PEM into account in their treatments. However, Norges ME Forening (Norwegian ME/CFS Society) notes significant gaps, including that the guideline is for long term fatigue rather than ME/CFS specifically, provides limited guidance of managing symptoms other than fatigue, an underestimation of illness severity and an overly optimistic view of recovery.
https://www.me-foreningen.no/nye-retningslinjer-forste-reaksjon/ - UK NHS England has published the third and final e-module in its clinical education series on ME/CFS. This module focusses on severe and very severe ME/CFS and aims to help clinicians and community workers to understand the practical adjustments they can make to mimimise exacerbating the condition.
https://learninghub.nhs.uk/Resource/79376/Item - A one page guide to long COVID for GPs has been produced by Victoria University, Wellington. The guide was co-designed in collaboration with people with lived experience and clinicians and was funded by the New Zealand government’s Health Research Council.
https://www.wgtn.ac.nz/fehps/centres/health-services-research-centre/recent-projects/evidence-based-management-of-long-covid/management-of-long-covid-in-primary-care/Resource-for-GPs-2026.pdf
Advocacy
- An expert discussion was held in the German parliament in December on the National Decade Against Post-Infectious Diseases. The discussion emphasised the biological nature of the post-infectious conditions, how the psychologisation of these conditions has hindered research and funding, and the need to focus research on biomarkers, diagnostics and treatments.
https://www.fatigatio.de/aktuelles/detail/zusammenfassung-des-fachgespraechs-zur-nationalen-dekade-gegen-postinfektioese-erkrankungen-im-bundestag%C2%A0 - US Congress has instructed the National Institutes of Health to develop an implementation plan for the ME/CFS Research Roadmap. Completed in 2024, the roadmap requires dedicated funding to be put into action. #MEAction has called on the NIH Director to allocate USD50m to suppprt its implementation.
https://www.meaction.net/post/senate-tells-nih-develop-plan-to-implement-me-cfs-research-roadmap - An educational campaign has been launched in Greece to tackle the myths about long COVID. Long COVID has not been recognised as a chronic disease by the Greek state, leaving many living with the condition without care. The “Long COVID Mythbusters” campaign aims to dispel misconceptions about the condition. The campaign was developed by the WHO Greek office, and supported by Long COVID Greece.
https://www.voria.gr/article/long-covid-after-pandemic-thousands-left-without-care-recognition-or-rights-greece - An outpatient long COVID clinic that was to be built as part of the University Clinic for Psychiatry and Psychotherapy at Vienna General Hospital (Vienna AKH), Austria, will no longer go ahead due to strong criticism that the planned clinic equated long COVID with psychiatric illness.
https://wien.orf.at/stories/3342206/ - Long COVID Awareness Day took place on March 15, with events taking place around the world and some media coverage. The rally in Vancouver was featured on local TV news.
https://youtu.be/e5hDZENnFyE?si=D28iexDBbPKPZRR_ - New Zealand government released the results of a long COVID survey, which found that approximately 185,000 New Zealanders currently live with long COVID symptoms. In response, the New Zealand Ministry of Health said that the government has “no plans for long Covid monitoring nor for any economic analysis.” Long COVID Support Aotearoa is calling for the government to implement national monitoring of long COVID.
https://longcovidsupport.co.nz/news/survey-kiwis-long-covid/
