The ME/cvs Vereniging is a Dutch association for and by those suffering from ME/CFS and their close ones. The small letters for "CVS" in its name underpins that the association wishes the medical world to stop using the name Chronic Fatigue Syndrome, which it considers stigmatizing. ("CVS" is the Dutch abbreviation for Chronic Fatigue Syndrome.)
Aims[edit | edit source]
The association's objective is:
- To provide and disseminate information about myalgic encephalomyelitis (code G93.3 in the ICD-10)
- To provide and disseminate information about chronic fatigue syndrome (code G93.3 in the ICD-10)
- promote the best possible outcomes for people suffering from ME/CFS, their partners, relatives and others close to them
- promote a clear public image of ME/CFS
- encourage those suffering from ME/CFS, their partners, relatives and those close to them in activities aimed at improving or restoring their health and improving their living conditions
History[edit | edit source]
ME/cvs Vereniging, originally known as ME en CVS Vereniging, was founded on April 15, 2005 by Eelco van Tuyll, Rico Landman and Guido den Broeder. In 2011, Guido den Broeder left as chairman and founded ME Vereniging Nederlands.
Funding[edit | edit source]
Their funding comes from individual contributions and donations.
Patient survey[edit | edit source]
In 2019, the association released a report summarizing the results of a 2017 patient survey. This report only included responses from patients who met the SEID diagnostic criteria, as these diagnostic criteria were considered consistent with the recent report by the Gezondheidsraad (Dutch Health Council). Of those completing the survey, 94% reported a diagnosis of ME, 2.6% reported a diagnosis of CFS, no patients reported a diagnosis of SEID, and 4% reported a different diagnosis.(p15)
Online presence[edit | edit source]
- Facebook page
- YouTube channel
- ME/cvs Vereniging's Science for Patients YouTube channel
Learn more[edit | edit source]
- Zorg voor betere behandeling bij ME - 2017 patient survey
References[edit | edit source]
- ME/cvs Vereniging (Oct 17, 2012). "Statuten". www.me-cvsvereniging.nl (in Nederlands).
- ME/CVS Vereniging. "ME/CVS Vereniging" (in Nederlands). Archived from the original on Jul 16, 2011.
- ME/cvs Vereniging (Oct 2011). "Algemene Ledenvergadering". Archived from the original on Oct 2, 2011. Retrieved Sep 23, 2019.
- ME Vereniging Nederland. "ME Vereniging". mevereniging (in Nederlands). Retrieved Sep 23, 2019.
- Corsius, L.; Crijnen, B.; Hogeweg; Kuijper (Sep 2019). "Zorg voor betere behandeling bij ME" (PDF). ME/cvs Vereniging. Retrieved Sep 11, 2019.
International Classification of Diseases (ICD) - A system of medical diagnostic codes, created by the World Health Organization (WHO), to classify diseases and other health related conditions for the purpose of international diagnostic consistency. By having common diagnostic codes around the world, health researchers are better able to quantify and track disease burdens. The most current version is called ICD-11. (Learn more: www.who.int)
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.