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

For a number of years the ME Vereniging Nederland continued the 'Landelijke ME informatiedag' (National ME information day), formerly organized by MEdivera, bringing together patients, advocates, doctors and researchers. Partipants included Guido den Broeder, Johannes Peperkamp, René Tisscher, Frank Twisk, Ruud Vermeulen, Frans Visser and Theo Wijlhuizen. The Vereniging tegen de Kwakzalverij has on various occasions, with support from Dutch authorities and politicians, attempted to discredit the day's contributors, but were ignored by the association.

The ME Vereniging Nederland has irregularly published 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.

Some of the association's activities had to be put on hold when chairman Guido den Broeder had to fight for survival against the city of Rotterdam, which had denied him welfare. Den Broeder achieved a major victory in 2016, but soon after the city started again, emptying his bank account and revoking his welfare by claiming that he had been working fulltime in 2017 for the Stichting ME Research.

Funding

The association doesn't receive any funding from the Dutch government. According to the Raad van State, the highest court for such cases, the Dutch government has the right to consider ME and CFS the same illness, even while the International Classification of Diseases doesn't support this.

Notable people

• Guido den Broeder (founder, chair)
• Theo Wijlhuizen (former medical advisor)

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

Because of the poor mobility of many ME patients, the ME Vereniging Nederland maintains a strong digital presence, including several social media, and most of the general information it provides can be found on its website.

• Website
• Facebook
• Twitter
• YouTube (DossierME)

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.

The association is the successor of the earlier ME en CVS Vereniging, founded in 2005, which included postviral, neurological chronic fatigue syndrome.

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, requested by parliament.

Learn more

• Wikisage - ME Vereniging Nederland

See also

• Dutch Brain Council
• Stichting ME Research

See myalgic encephalomyelitis.

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.

See chronic fatigue syndrome.

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.

See systemic exertion intolerance disease.