ME, CFS and SEID
Although the foundation uses a combination concept of ME/CFS in their name in order to be relevant to many doctors and patients, the charity produced a 2018 policy document, entitled “Beleidsvisie ME in Nederland” (“Policy vision, ME in the Netherlands”), which describes "CFS" as a stigmatizing term and recommends "ME" as the future term to be used.(p7)
- Otto Albrecht - Director
- Caroline Nouwen - office staff
- Theo Kuiphof - President
- Jaap Jan Pieterman - general board member
- Pieter Miedema - Treasurer
- Ronnie Schuurbiers - Secretary
ME/CVS-Stichting Nederland was founded in 1987.
ME/CVS-Stichting Nederland receives modest government funding as a result of being recognized as the national ME/CFS patient organization for the Netherlands.
Interviews and articles
- "Home". ME/CVS Stichting Nederland (in Nederlands). Retrieved Sep 9, 2019.
- "Wat is ME/CVS?". ME/CVS Stichting Nederland (in Nederlands). Retrieved Sep 12, 2019.
- Board of the ME/CVS Stichting Nederland (Mar 19, 2018). "Beleidsvisie ME in Nederland" (PDF). ME/CVS Stichting Nederland. Retrieved Sep 11, 2019.
- "Onze Stichting". ME/CVS Stichting Nederland (in Nederlands). Retrieved Sep 24, 2019.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.
chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.