Belangenorganisaties wereldwijd
The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients.
The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
The alliance was formed in 2008 by national charities and organisations from Belgium, Denmark, Germany, Ireland, Norway, Sweden and the UK.
ME/CFS is a debilitating neurological illness classified as such by the World Health Organisation under ICD-10 G93.3.
Our aim is to bring together a European lobby of groups to campaign for funding of biomedical research to establish an understanding of the aetiology, pathogenesis and epidemiology of ME/CFS. This should lead to the development of treatments to cure or alleviate the effects of the illness.
Fatigatio is de Duitse nationale zelfhulporganisatie die verantwoordelijk is om de belangen van de naar schatting 300.000 Duitse ME-patiënten te verdedigen.
Doel: informeren over diagnose en therapie, met raad en daad bijstand. Voorlichting en educatie.
Lid van Europese ME Alliantie (EMEA)
The IACFS/ME was founded in 1990 by Dharam V. Ablashi and Orvalene Prewitt, and was chartered in 1992 as a not-for-profit organization in the state of Oklahoma. The goals set forth by the Board of Directors at the first meeting were to bring together researchers, clinicians, healthcare workers, CFS support groups and patients, so that all could learn more about this illness through discussion, research and treatment and education, especially educating physicians to diagnose and treat CFS patients. These goals have been achieved through conferences held biannually throughout the United States. The IACFS/ME went through a phase when CFS was not recognized by most practicing physicians, despite recognition by the CDC and NIH. In 2005 the AACFS changed its name to IACFS/ME.
The IACFS/ME has now extended its membership and participation to foreign researchers and clinicians, with a new Board of Directors with international members.
Onafhankelijke Britse belangenorganisatie die opkomt voor biomedisch onderzoek naar ME. Invest in ME is een stichtend lid van de Europese ME alliantie. Organiseert de jaarlijkse Invest in ME Conference.
Lid van Europese ME Alliantie (EMEA)
De Irish ME Trust is een nationale Ierse organisatie die de belangen verdedigt van ME-patiënten. De organisatie werd opgericht in 1989 met het oog om een deel van de ontbering te verlichten die ervaren wordt door mensen die aan ME lijden doorheen het land.
IMET biedt informatie en een hulpverleningsdienst voor de mensen die getroffen zijn alsook de individuele problemen die patiënten ervaren. Ze hebben tot doel om het grote publiek en de medische professie bewust te maken van het lot van ME-patiënten en om fondsen te werven voor onderzoek naar de ziekte.
Lid van Europese ME Alliantie (EMEA)
De Ierse ME/CFS Association streeft ernaar om de situatie van ME/cvs-patiënten te verbeteren middels verschillende activiteiten en sensibiliseringscampagnes en geeft hen informatie om zich sterker op te stellen. De groep die al zeven jaar volledig door vrijwilligers wordt gerund, heeft ongeveer 400 leden, van de geschatte 10.000 patiënten in Ierland.
The Bristol ME Support Group is a patients’ organisation run by people