National Patient Organizations by Country

1 Belgium

Belgian organizations are primarily Flemish-based, with limited French-language resources for Wallonia. In Belgium, the condition is typically referred to as “CVS” (Chronisch Vermoeidheidssyndroom) rather than ME.

The ME Association (Belgium) raises awareness and strives for recognition of the disease. Organizes support groups in Antwerp, Hasselt, Ypres, and Nieuwrode. Operates an ME help-line. Co-founder of the European ME Alliance.

Aims at CFS and fibromyalgia patients, provides information on legitimate scientific research. Publishes quarterly magazine “Immune” and organizes meetings in Flanders.

1.1 RIZIV/INAMI-Recognized Diagnostic Centers

Historical Context Belgium originally established five CVS reference centers around 2002 at university hospitals (UZ Leuven, UZ Gent, UZ Antwerpen, UZ Brussel, and one in Wallonia). These centers operated until 2012, when RIZIV abruptly cut funding. In 2014, a new system of “Multidisciplinary Diagnostic Centers” replaced them, but with reduced scope. As of 2024, only one center has signed the current convention.

  • UPC KU Leuven – Multidisciplinair Diagnostisch Centrum ME/CVS:

Address: Leuvensesteenweg 517, 3070 Kortenberg

Phone: +32 2 758 05 11 (general); +32 2 758 16 77 (CVS consultation)

Email: cvsupckuleuven.be

Website: https://www.upckuleuven.be/nl/zorgaanbod/cvs

Consultation hours: Tuesday 9:00–12:00, Wednesday 9:30–12:00 (by appointment)

As of 2024, this is the only center in Belgium with an official RIZIV/INAMI convention for ME/CVS. The center provides multidisciplinary diagnostic assessment and, if ME/CVS is confirmed, develops a care trajectory in collaboration with the patient’s GP. Referral must come from a GP who suspects ME/CVS. Convention runs until 2028.

The RIZIV/INAMI convention mandates cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as the reimbursed treatments—an approach based primarily on the UK PACE trial, which has been heavily criticized for methodological flaws and subsequently disavowed by NICE guidelines (2021). Large patient surveys consistently report that GET worsens symptoms in the majority of ME/CFS patients, while CBT shows limited benefit for core symptoms. Belgian patient organizations have criticized this policy as outdated and potentially harmful. Patients should be aware that accepting the convention’s treatment pathway means committing to CBT/GET-based rehabilitation, which may not align with current international best practices emphasizing pacing and symptom management.

The convention offers reimbursement for up to 17 CBT sessions (individual: 50 min at € 86.69; group: 90 min at € 57.80 per participant—2024 rates). Maximum 8 sessions may be in group format. Contact RIZIV: Evi Declercq, +32 2 739 71 97, evi.declercqriziv-inami.fgov.be. ### Other Clinical Resources

University Hospital Leuven provides care for pronounced fatigue lasting more than 6 months that doesn’t improve with rest and significantly limits daily activities.

University Hospital Antwerp’s Center for Behavioral Therapy for Fatigue (CGVF) treats patients with fatigue and functional complaints including CVS, chronic fatigue, fibromyalgia, and post-infectious fatigue.

  • UZ Gent CVS Network:

UZ Gent coordinates an integrated care model for abnormal fatigue in East and West Flanders. Partners include AZ Alma, AZ Groeninge, Jan Yperman Ziekenhuis, AZ Maria Middelares, AZ Sint-Jan, AZ Nikolaas, AZ Delta, and others. The GP serves as care process manager.

1.2 Sleep Medicine (Wallonia)

  • Centre Multidisciplinaire de Somnologie – Clinique Saint-Luc Bouge:

Address: Rue Saint-Luc 8, 5004 Bouge (Namur)

Phone: +32 81 20 94 61

Email: labosommeilslbo.be

Website: https://slbo.be/services/centres-integres-et-pluridisciplinaires/centre-multidisciplinaire-de-somnologie/

Established in 1993, this is a major French-language sleep medicine center in Wallonia. INAMI-accredited since 2002 for CPAP treatment and since 2018 for mandibular advancement devices. The multidisciplinary team includes pneumologists, neurologists, psychiatrists, ORL specialists, and psychologists. Accepts patients from age 15 with any sleep disorder. As of September 2025, waiting times reduced to approximately 6 weeks (compared to 6–8 months at many Belgian hospitals). Chief of Service: Dr Richard Frognier.

While sleep clinics do not diagnose ME/CFS directly, they are valuable for ruling out primary sleep disorders (sleep apnea, narcolepsy, etc.) that can cause chronic fatigue, and for documenting the non-restorative sleep characteristic of ME/CFS. A sleep study may be part of the differential diagnosis workup. ## France {#subsec-france-orgs}

The only ME/CFS patient association approved by the French Ministry of Health (2015). Located in Lille. Works with a Scientific Board to welcome, inform, and support patients. Operates phone hotline, organizes regular patient meetings throughout France, and annual meetings with expert scientists.

French chapter of the #MillionsMissing movement.

ME/CFS is not officially recognized by the French Department of Health, leading to under-diagnosis and lack of disability recognition. ## Luxembourg

No dedicated ME/CFS patient organization exists in Luxembourg as of 2025. Patients may connect with:

  • Belgian or French organizations (French-language)
  • German organizations (German-language)
  • EUROMENE network for research connections
  • European ME Alliance for pan-European advocacy

2 Germany

German Society for ME/CFS, founded in 2016, based in Hamburg. Run by volunteers advocating for patient rights and medical/social recognition. Organized the first Parliamentary Expert Discussion on ME/CFS in the Bundestag (March 2020). Successfully lobbied for ME/CFS and Long COVID mention in federal government coalition agreement (2021). Successfully challenged the German “Tiredness” guideline’s recommendations for GET and CBT.

Federal Association ME/CFS, founded in 1993, based in Berlin. Over 2,900 members. Operates 15 regional self-help groups across German cities. Organizes annual hybrid ME/CFS conference with national and international experts.

Germany has seen dramatic growth in ME/CFS cases post-COVID: from an estimated 250,000 pre-pandemic to over 650,000 by end of 2024. ## Netherlands {#subsec-netherlands-orgs}

Dutch association founded in 2005. The lowercase “cvs” deliberately underscores the desire for the medical world to stop using the name “Chronic Fatigue Syndrome.” Involved in international partnerships including UK ME/CFS Biobank, Solve ME, Open Medicine Foundation, and Charité Berlin.

  • ME Vereniging Nederland: Founded 2011. Membership open only to ME patients. Focus on improving living conditions and reducing social exclusion.
  • ME/CVS-Stichting Nederland: Founded 1987. Receives government funding as recognized national ME/CFS patient organization.
  • Steungroep ME en Arbeidsongeschiktheid: Founded 1994. Support group focused on employment, education, disability, and benefits issues. Campaigns against exclusion from disability benefits.

The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium is a national collaboration of research institutes, patient organizations, and clinical centers establishing a comprehensive patient cohort and biobank.

3 United Kingdom

One of the two largest UK ME/CFS charities. Provides information, advocacy, and services. Publishes quarterly magazine ME Essential. Funds the UK ME/CFS Biobank. Conducted major patient surveys (2010, 2015) documenting treatment experiences. Hosts local support groups nationwide.

Founded 1987 as The M.E. Action Campaign. Merged with Association of Young People with ME in 2017. Funds high-quality research including the groundbreaking DecodeME study (largest ME/CFS genetic study ever, 15,000+ UK participants). Offers free support services including holistic healthcare services.

Multidisciplinary organization for UK healthcare professionals delivering care to ME/CFS patients.

4 Ireland

Works to improve the situation for people with ME/CFS in Ireland. Notable advocate: Tom Kindlon (Assistant Chairperson), who has been housebound with severe ME for over 22 years. Known internationally for his extensive analysis and publications on the PACE trial and harms of graded exercise therapy.

Northern Ireland ME/CFS and fibromyalgia patient organization.
Organization Name Description
Hope for ME & Fibro Northern Ireland Founded 2011 by Joan McParland MBE, inspired by Tom Kindlon’s work.

5 Norway

Norwegian ME Association, founded 1987 by Ellen Piro. Represents over 6,000 ME patients. Party-political independent organization. Works to ensure diagnosis based on Canadian Consensus Criteria. Member of European ME Alliance.

Norwegian non-profit foundation dedicated to funding biomedical ME research. Supporting a promising daratumumab pilot study at Haukeland University Hospital.

Norway has been a leader in ME/CFS research, pioneering innovative treatment approaches including the rituximab trials and subsequent work on autoimmunity. ## Denmark {#subsec-denmark-orgs}

National association since 1992. Works to increase knowledge in the Danish healthcare system about ME as a physical/biomedical disease. Achieved unanimous Danish parliament vote to separate ME (ICD-10 G93.3) from Functional Disorders. Counseling available Wednesday/Friday 12–14 at +45 44 95 97 00.

6 Sweden

  • Riksföreningen för ME-patienter (RME): Swedish national association for ME patients. Member of European ME Alliance.

7 Switzerland

Self-help organization founded 1993 in Zurich. Offers information platform, networking, and support. Hosts regular group meetings in several Swiss cities.

Swiss German ME/CFS professional society.
Organization Name Description
Schweizerische Gesellschaft für ME/CFS (https://sgme.ch/) Swiss professional society for ME/CFS.

Swiss French ME/CFS patient association.
Organization Name Description
Swiss Association for ME/CFS Founded 2019. Fights for recognition and adequate care. Conducts biennial comprehensive surveys on Swiss ME patient situations. First analysis published 2021.

Swiss research shows mean diagnosis time of 6.7 years, average 11.1 different appointments, 2.6 misdiagnoses, and 13.5% of patients traveling abroad to seek diagnosis. 90.5% of patients were told at least once that symptoms were psychosomatic. ## Spain {#subsec-spain-orgs}

National Coalition of FM, CFS/ME, MCS, and EHS. Established 2004. Based in Jerez de la Frontera.

  • ONG-PEM (Asociación de Personas con Encefalomielitis Miálgica): Founded and run by severely ill patients. Exclusively represents Myalgic Encephalomyelitis.
  • Associació Catalana d’Afectats SFC/EM: http://www.acsfcem.org/

Catalonia-based patient association.

Spanish Facebook groups include VIVIR CON SFC/EM and #MillonesAusentes (Spanish #MillionsMissing).

8 Italy

Founded 1991 by Prof. Umberto Tirelli in Udine—first Italian physician to identify CFS cases. Based at Centro di Riferimento Oncologico, Aviano.

Patient advocacy group founded 2004, based in Pavia. Part of Rare Disease Alliance (Alleanza delle Malattie Rare). Celebrated 20 years in 2024.

Veneto-based patient organization.

CFS Italia Forum (http://www.cfsitalia.it/) provides Italian-language patient community and information exchange.

9 Australia

National organization providing services, evidence-based education, advocacy, and research. Free national health and support line: 1800 865 321 (9am–4:30pm Mon–Fri). Offers online patient/carer education, peer support groups, RACGP CPD-approved healthcare professional education. Partners with Solve ME on AusME patient registry and biobank.

Peak body for patient-led ME/CFS charities. Focuses on federal government advocacy, research initiatives, and national awareness campaigns.

10 United States

Serves patients and caregivers through support, advocacy, and education. Channels patient perspectives to government agencies and initiatives. Comprehensive website with links to international organizations.

Provides resources for medical providers caring for ME/CFS patients. Developed clinical guidance documents.

Medical center of excellence for ME/CFS and fibromyalgia. Founded by Dr. Lucinda Bateman. Focuses on diagnosis, treatment, research, and patient empowerment.