International Patient Organizations

1 Major Global Organizations

• Solve ME/CFS Initiative (Solve M.E.): https://solvecfs.org/

US-based non-profit serving as a catalyst for research into ME/CFS, Long COVID, and other infection-associated chronic conditions. Operates the You+ME patient registry and biobank, funds research, and conducts policy advocacy. One of the largest and most influential ME/CFS organizations globally.

• Open Medicine Foundation (OMF): https://www.omf.ngo/

Founded by Linda Tannenbaum, whose son has ME/CFS. Directs the Scientific Advisory Board chaired by Ron Davis, PhD. Operates six international ME/CFS Collaborative Research Centers and funds the End ME/CFS Project. Known for patient-centered research approach and involvement of patients and family members at leadership level.

• International Association for CFS/ME (IACFS/ME): https://www.iacfsme.org/

International non-profit organization of clinicians, scientists, professionals, patients, and advocates. Publishes the peer-reviewed journal Fatigue: Biomedicine, Health, and Behavior, organizes international conferences, and promotes science-based care.

• #MEAction Network: https://www.meaction.net/

International patient-led advocacy network fighting for health equality. Co-founded by filmmaker Jennifer Brea. Organizes the annual #MillionsMissing protests, provides advocacy training, and supports local patient groups worldwide. Known for effective use of social media and grassroots organizing.

• World ME Alliance: https://worldmealliance.org/

Global coalition of national ME organizations working to coordinate international advocacy efforts and share resources across countries.

2 European Organizations

• European ME Alliance (EMEA): https://www.europeanmealliance.org/

Pan-European patient organization representing 18 countries. Founded in 2008 as collaboration of national patient charities. Member of European Patients’ Forum (EPF) and European Federation of Neurological Associations (EFNA). Conducts the Pan-European ME Patient Survey (over 11,000 respondents in 2024). Created the European ME Research Group (EMERG) and European ME Clinicians Council.

• EUROMENE: https://www.euromene.eu/

European Network on ME/CFS—a COST (European Cooperation in Science and Technology) supported network of research groups across Europe. Published expert consensus on diagnosis, service provision, and care in Europe (2021).