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Press Release from NL: State Secretary Bussemaker recognizes CFS as a chronic illness

Discussion in 'Action Alerts and Advocacy' started by Carla-nl, Jan 18, 2010.

  1. Carla-nl

    Carla-nl Veteran by now

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    State Secretary Bussemaker recognizes CFS as a chronic illness
    Breakthrough for People with ME / CFS

    Source: ME/CFS Netherlands Foundation (press release)
    Date: January 18, 2010
    url: http://www.me-cvs-stichting.nl/2660

    State Secretary Jet Bussemaker of the Ministry of Health, Welfare and Sport (VWS) has accepted the advice of the Taskforce “Linschoten” to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness. If the Dutch Parliament accepts her proposal (motion), all CFS patients in the Netherlands will finally be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation).

    The "ME/CVS Foundation" in the Netherlands has advocated putting ME/CFS on the VWS list (the so-called Borst list) for chronic illnesses for years. Currently, people with ME/CFS are still excluded from aid services for chronically ill patients (disabled assistance). After many years of advocating, the foundation managed to put the issue high on the Dutch political agenda.

    State Secretary Bussemaker asked an independent Task Force lead by former Secretary Robin Linschoten to examine which disorders should be considered for disabled assistance.

    The Linschoten task force concluded in its final report that people with ME/CFS are unfairly excluded from the benefits of this law and advised the Secretary to include Chronic Fatigue Syndrome patients in the law. The State Secretary has informed the president of the Dutch parliament (Tweede Kamer) of this advice. The proposal will be discussed in parliament soon.

    The "ME/CFS Foundation" in the Netherlands is very pleased that the experts and the State Secretary now recognize ME/CFS as a disabling, chronic disease and is confident this recognition will very soon be legally established.




    Notes to the press release by Diagnose Support:

    This article states the advice from the State Secretary to categorize ME/CFS as a chronic illness to the members of Parliament. This does not mean the legislation has already changed. The advice to do so is to be discussed in Parliament 'soon' as stated in the press release.

    Nevertheless, any step towards acknowledging the physical impairments of ME/CFS patients is a huge milestone. The "Linschoten Taskforce" statement that "ME/CFS patients are 'unfairly excluded' from the benefits that come with the classification of ME/CFS as a chronic illness" itself is breaking news. Specifically, this means it will be easier for ME/CFS patients to obtain aids like crutches, wheelchairs, licenses for disabled parking etc. and in some cases extra financial support.

    At this time it is unclear to us if it also means ME/CFS patients will be more entitled to a disability pension as a regular income. We also would like to raise the question which type of doctors' diagnosis will be accepted for both type of benefits.

    Last but not least, by taking another step forward, maybe... just maybe ME/CFS will also be more eligible to receive funding for research.


    Translation by Diagnose Support Translation Team



    Other info (in Dutch)



    Credit to:
    - Thea
    - Frickly



    This translation and the comments are posted on : www.diagnosesupport.com

    .
     
  2. The Phantom

    The Phantom Member

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    near Philadelphia
    Yay!

    :victory: :balloons: :victory: This is really great news! Congratulations & thanks to all the people involved in getting this to happen. It helps all of us.
    :Sign Good Job:
     
  3. Esther12

    Esther12 Senior Member

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    So previously, people with CFS were just put on unemployment benefit? By heck. Good news it's changed, shocking it needed changing.
     
  4. Frickly

    Frickly Senior Member

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    Good news Carla! I am so happy for all who may be helped by this decision. Hopefully, it will spread to other parts of the world.
     
  5. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Prayers to all our friends in the Netherlands who are disabled with CFS that this motion goes through and is accepted.
     
  6. George

    George Guest

    I hope this is the first of many positive moves in the world of CFS/ME!
     
  7. Carla-nl

    Carla-nl Veteran by now

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    Hi All, thanks for your well wishes on this !

    Yes, it is a major milestone because when the motion/bill will be accepted, technically CFS patients can apply for disabled assistance as mentioned above.


    HOWEVER, wether or not a patient receives a monthly disability pension is reviewed per case by the Dutch disability 'board' (called UWV) , where Doctors and Occupational Specialists determine:
    A) if you are able to work, and if so for how many hours, and by which possible restrictions
    B) what kind of work you would still be suitable for

    • Getting them to say you are UNABLE or partially unable to work is still a problem. Only patients who are completely bedridden are entitled to full-benefits (if they can prove this, a doctor agrees, etc and not all applications are awarded).
    • Some patients are awarded partial disability pensions and have to rely on their partner for the rest if they cannot work (although told they can).
    • And some patients have to sell their house and/or either rent cheaper or move in with family etc. in order to survive financially.
    • And then there is the group that manages to find a job for a few hours per week and is actually able to work a little to supplement their disability pension.
    • Last but not least, there is a group that is denied a disability pension and is deemed fit to work fulltime. CFS is not a diagnosis by which disability is easily granted. There are many patients involved in legal battles with the UWV to try and claim their rights. Until the issue is resolved in their favor, they receive no pension.

    If one would call in sick when first falling ill, one would get (i think) a one year 'sick leave' with i believe 70% of your income (sometimes the employer pays out 100%). After that you are up for review by the UWV. I'm not quite sure what happens if they totally feel you're not ill at that point. If you would stay home inspite of the advice to go back to work, i suppose your employer could terminate your contract, you could then file for unemployment (if you have build up the right to unemployment). If you also do not have the right to unemployment benefits, or after the period you are entitled to them runs out, there's always still 'Wellfare' which covers basic costs. BUT, these days when on welfare, you also have to apply for work... which cfs patients couldn't to begin with..... If you don't apply for jobs, you loose wellfare too.

    Legislation is a complicated matter in all countries. Let's not get into to much detail here.


    There is a very good organization in The Netherlands working hard to improve the process (Website Steungroep).
    Big applaus for them. And please... for all of you in Holland that have not heard of them before, please do contact them if you need help.

    Carla
     

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