ME Vereniging Nederland: Difference between revisions

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The '''ME Vereniging Nederland''' (Netherlands ME Association) 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".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> The association is a member of the Dutch Brain Council and the Patiëntenfederatie Nederland. Its position is that ME is unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref>
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".<ref>[http://www.mevereniging.nl/me-vereniging/ ME Vereniging Nederland], about</ref> The association is a member of the Dutch Brain Council and the Patiëntenfederatie Nederland. Its position is that ME is unrelated to [[CFS]] and [[SEID]].<ref name="VWS_20190327">[https://debatgemist.tweedekamer.nl/debatten/patiëntenorganisaties-mecvs "Patiëntenorganisaties ME/CVS"] (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March</ref><ref>ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September</ref>


==Aims==
==Aims==


==Activities==
==Activities==
 
Several projects are carried out by the [[Stichting ME Research]]:
===Stichting ME Research===
* Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>G. den Broeder (2015), [http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf "Doorlopende Enquête Patiёntenperspectief 2012-2014"], Stichting ME Research, 9 September
Several projects are carried out by [[Stichting ME Research]]:
* 2015, Doorlopende Enquête Patiëntenperspectief (''Continuous Patient Perspective Survey'')<ref>{{Cite web |first=G. |last=den Broeder|author-link =Guido den Broeder |url= http://www.meresearch.nl/PDF/20150909_STMER_DEPME_Overzicht_2012-2014.pdf|title= Doorlopende Enquête Patiёntenperspectief 2012-2014|website =Stichting ME Research|date=Sep 9, 2015}}
</ref>
</ref>
* 2014, Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>{{Citation|first=G. |last=den Broeder|author-link=Guido den Broeder |title=Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)|website =Stichting ME Research|date = May 6, 2014|url=|}}</ref>
* Richtlijn voor Myalgische Encefalomyelitis (''Guideline for Myalgic Encephalomyelitis'')<ref>G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May</ref>
* [[Wetenschap voor Patiënten]] (''Science for Patients'')
* [[Wetenschap voor Patiënten]] (''Science for Patients'')


==Funding==
==Funding==
The association doesn't receive any funding from the Dutch government.{{citation needed}}
The association doesn't receive any funding from the Dutch government.


==Notable people==
==Notable people==
Line 37: Line 35:
{{reflist}}
{{reflist}}


[[Category:Patient groups]]  
 
[[Category:Dutch patient groups]]
[[Category:Patient groups]] [[Category:Dutch patient groups]]

Revision as of 20:15, September 15, 2019

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".[1] The association is a member of the Dutch Brain Council and the Patiëntenfederatie Nederland. Its position is that ME is unrelated to CFS and SEID.[2][3]

Aims[edit | edit source]

Activities[edit | edit source]

Several projects are carried out by the Stichting ME Research:

  • Doorlopende Enquête Patiëntenperspectief (Continuous Patient Perspective Survey)[4]
  • Richtlijn voor Myalgische Encefalomyelitis (Guideline for Myalgic Encephalomyelitis)[5]
  • Wetenschap voor Patiënten (Science for Patients)

Funding[edit | edit source]

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

Notable people[edit | edit source]

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[edit | edit source]

History[edit | edit source]

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.[2]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. ↑ ME Vereniging Nederland, about
  2. ↑ 2.0 2.1 "Patiëntenorganisaties ME/CVS" (2019), round-table discussion, Commissie VWS, Tweede Kamer, 27 March
  3. ↑ ME Vereniging Nederland (2019), "Flater Tweede Kamer: 'Erken ME/CVS'", news item, 15 September
  4. ↑ G. den Broeder (2015), "Doorlopende Enquête Patiёntenperspectief 2012-2014", Stichting ME Research, 9 September
  5. ↑ G. den Broeder (2014), "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May

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.

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