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NL: a twist in acnowledging M.E or C.F.S. (?) as a chronic illness & Canadian C. NL

Discussion in 'Action Alerts and Advocacy' started by Carla-nl, Jan 30, 2010.

  1. Carla-nl

    Carla-nl Veteran by now

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    On a day with such good news (Reeves exit and Clara Valverdes book coming out) I am sorry to have to report a less positive issue.

    Last week, very enthusiastic, I posted the information regarding the State Secretarys decision to recommend M.E./C.F.S. as a chronic illness in the next parliament session. (See last weeks post)

    There is good news and bad news: In a letter to the press, State Secretary Bussemaker reports that this recommendation turns out to be ONLY for children with CFS. Pediatricians seem to keep a classification list, on which CFS seems to be a category (we now wonder if M.E. is on that list as well).

    Clinical specialties such as Neurology, Rheumatology do not even have a list to categorize adult CFS patients in. They either fall into one of the specialtys regular subcategories and can claim the Wtcg benefits based on that (or based on the fact that they receive a (partial) disability pension) or not.

    Patients who have been dismissed by specialists and receive no disability pension therefore seem to fall between the cracks

    SEEM to fall between the cracks, because a diagnosis of M.E. will grant you the Wtcg rights! Patients with the diagnosis CFS only fall between the cracks. We all agree that there are probably different subtypes of M.E./C.F.S. patients, we also have to agree that there are too little clinical experts to even differentiate them. They are not in The Netherlands or maybe 1

    Although we have a number of CFS specialist centers in The Netherlands, I do wonder if they care to differentiate patients when they diagnose them and line them up for the only therapy proven useful .

    The good news Regardless of the diagnosis M.E. or C.F.S., the children will have rights to extra benefits soon.



    Sources:
    Frank Twisk Reaction to developments regarding CVS and Wtcg
    Steungroep ME/CVS en arbeidsongeschiktheid: 27 januari 2010: Erkenning CVS als ziekte met hoge meerkosten geldt alleen voor kinderen.



    Additionally, the Canadian Guidelines seem to be translated in Dutch for those who are interested.
    29 januari 2010 Steungroep: ____ Vertaling Canadese criteria ME/CVS: ____ warm aanbevolen!


    But i'm still smiling today

    Carla

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