| NL - The saga continues - ME-CFS foundation bewilderd |
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| Written by Carla |
| Monday, 08 February 2010 19:51 |
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January 18th the Dutch ME-CFS foundation proudly stated in their press release that our State Secretary of the Ministry of Health, Welfare and Sport (VWS) had adopted the recommendation from the Taskforce "Linschoten" to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness, which she was going to discuss in /relay to our parliament shortly. With this recommendation (and the possible motion/change in law), Dutch ME/CFS patients would then be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation). (See translated press release) A little less then two weeks after the announcement, State Secretary Bussemaker sent in a letter which was published on a press site stating, the recommendation was only meant for children with CFS who were categorised as CFS patients in the pediatric classification list. (read our report of January 30) The ME-CVS foundation reacted today with a press release stating their (and the Dutch patient community's) bewilderment regarding the retraction of the commitment to people with ME/CFS..... According to the ME-CFS foundation, there was nothing specific in the Taskforce "Linschoten"'s report that stated the recommendation should be for children only. The State Secretary's change in her recommendation was sent in after she received additional information from the Taskforce. We are unaware of the reasons that lie behind the Taskforces' addition to the initial report. The ME-CFS foundation considers differentiating between children and adults with ME/CFS medically not scientifically justifiable, a discrimination and a sincere dissapointment for patients who have been awaiting this acknowledgement for a long time. State Secretary Bussemaker gave ME/CFS patients hope. Her new recommendation puts all of the light that patients saw when the initial press release came out, far behind a cloudy horizon. It feels like we are going back in time instead of forward. Diagnose Support is saddened by the news and we do not understand why State Secretary Bussemaker finds it necessary to differentiate between adults and children. The statement that adults with ME/CFS are classified by medical specialists into other categories, does not by far reflect the truth. Many patients are dismissed by primary health care practitioners and specialists all around the country. They never receive a diagnosis nor a classification, hence no benefits in terms of the Wtcg unless they are 'fortunate enough' to receive a disability pension (WAO/WIA). |