Netherlands ME/CFS Association
Run by Frank Twisk. Frank is not a physician , but as an expert by experience he has studied a lot of professional literature and relevant issues (complaints / symptoms where he was a patient encountered) summarized and tried out.
ME/cvs Vereniging is a patient association that represents the interests of patients suffering from Myalgic Encephalomyelitis and their loved ones. They do this by:
They provide information about the disease ME, research and treatment methods, and about the latest scientific developments. They do this via their website, facebook page, twitter, news bulletins and vtheir association magazine Read ME.
They also fight for ME disease to be recognized as a seriously debilitating physical condition, so that patients can access research, treatment and facilities.
The ME / CFS Stichting Nederland
The foundation is the national patient organization for people with ME / CFS and therefore receives a modest subsidy from VWS. The ME / CFS Stichting Nederland is a Public Benefit Organization (ANBI) and is a charity recognized by the CBF .
The ME / CFS Foundation has been committed to providing the right care for people with ME / CFS since 1987, so that their quality of life improves and they can recover where possible. We do this with dedication, integrity and an open, independent attitude.
The ME / CFS Foundation wants to be recognizable and findable for doctors and patients, regardless of the diagnostic label that they use.
The ME / CFS Foundation believes that the name chronic fatigue syndrome (CFS) should eventually disappear, due to the stigmatizing nature of the name. The term myalgic encephalomyelitis (ME) has the most support among patients and is recommended by us as a future name for the disease.
The ME / CFS Stichting Nederland is committed to strengthening and improving the position of people with ME / CFS.
The ME / CFS Stichting Nederland strives for the following objectives:
- Providing information about all possible aspects of ME / CFS to people with ME / CFS and their environment, healthcare providers and interested parties.
- Promoting peer contact between people with ME / CFS.
- Promoting the (collective and individual) interests of people with ME / CFS and their environment, both towards healthcare providers and governments.
- Promoting the most favorable social and individual situation for people with ME / CFS and their environment.