Worldwide protest of patients with ME against social exclusion
After being ignored for years and being excluded from participation in society, ME patients have had more than enough of it. With a virtual march on social media and demonstrations from America to Australia patients call for recognition of their disease and demand care and research. The action is an initiative of #MEAction and the Dutch meeting will take place on september 27th 2016 from 10 am to 4 pm in The Hague at Het Plein.
A lot of ME patients are suffering for years …. in silence. This silence will, initiated by #MillionsMissing Holland, being part of the worldwide protest of #MillionsMissing – be broken at last. Thousands of ME patients in the Netherlands will speak in one voice on tuesday september 27th and ask for biomedical research, better diagnostics, better treatment and better education of physicians.
Myalgic Encephalomyelitis (ME) is a serious disabling physical disease that amongst other things is defined by a worsening of symptoms and not being able to recover easily from minor exertion.
25% of Dutch ME-patients is house-or bedbound, they are not able to come to the Hague. These patients let themselves be represented by their shoes. Where they normally lead their lives in silence and isolation, they get a face and a voice by those shoes. All shoes are provided with a label that mentions what the patient is missing as a consequence of this seriously disabling disease. Most texts are personal and heart rending: disturbing cries for help.
ME patients find themselves in an extraordinary position of exclusion and stigmatisation. In spite of recognition of ME as a neurological disease by the World Health Organisation, the symptoms are in a lot of countries regarded as not to be objectifiable. This has a lot of consequences for the treatment patients are receiving now from physicians, caseworkers, homecare and social benefits agencies. Benefits, care and the use of (mobility) aids are wrongly refused. Although they are offered a -mostly forced upon- treatment to push their boundaries, this makes patients with ME even more ill and can lead to big relapses.
NOTE for the press:
Contact #MillionsMissing Holland: Carolien van Leijen
Telefoon: 038 – 3763144
Presskit with background information and footage:
For topical news about the #MillionsMissing Day of Protest:
* Facebook: www.facebook.com/