ME Vereniging Nederland

The ME Vereniging Nederland (ME Association Netherlands) is the national association of people with myalgic encephalomyelitis in the Netherlands. Its goal is to "improve the living conditions and health of ME patients and reduce social exclusion". Its position is that ME is a brain disorder, previously considered nonparalytic poliomyelitis, unrelated to CFS and SEID. The association is a member of the Dutch Brain Council and the Patiëntenfederatie Nederland.

Activities

The ME Vereniging Nederland irregularly publishes a digital newslettter called MEling.

Several projects are carried out by the Stichting ME Research:

• Doorlopende Enquête Patiëntenperspectief (Continuous Patient Perspective Survey)
• Richtlijn voor Myalgische Encefalomyelitis (Guideline for Myalgic Encephalomyelitis)
• Wetenschap voor Patiënten (Science for Patients)

The association has on various occasions occupied a boot as part of the Hersenstraat (brain street), a joint activity by member organizations of the Dutch Brain Council to present themselves at events.

Funding

The association doesn't receive any funding from the Dutch government.

Notable people

• Guido den Broeder (Founder)

The association doesn't reveal the membership status of ME patients other than its chair, in order to prevent harassment and potential loss of benefits.

Online presence

• Website
• Facebook
• Twitter

History

The ME Vereniging Nederland was founded 1 September 2011 by long-time patient and advocate Guido den Broeder. Membership is only open to ME patients. It has grown steadily to about 250 members in 2019.

February 2016, the association joined the Dutch Brain Council.

The organization has rejected the 2018 advice of the Dutch Health Council. It states that the council erred by attaching the wrong terminology to SEID criteria, and has failed to produce an advice on ME.

Learn more

• Wikisage - ME Vereniging Nederland

See also

• Stichting ME Research

myalgic encephalomyelitis (M.E.) - 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.