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Dutch ME conference on May 8, 2013

Discussion in 'General ME/CFS News' started by Guido den Broeder, Feb 25, 2013.

  1. A conference on ME will be held by the ME Vereniging Nederland, the patient association for ME in The Netherlands, on May 8, 2013 in the city of Haarlem.

    In the morning, a selected group of specialists is going to discuss the development of a multidisciplinary guideline for ME. In the afternoon, there will be lectures by Johannes Peperkamp (neurologist from Belgium), Frans Visser (cardiologist) and Theo Wijlhuizen (internist).

    Source: ME Vereniging Nederland, February 25

    The position of ME patients in The Netherlands has grown particularly awkward after the recent publication of a government-initiated guideline on CFS, in which it is claimed claim that:
    - ME is synonymous to CFS;
    - CBT/GET is the only remedy;
    - patients should not be medically examined beyond basic bloodwork;
    - viral infections should not be treated.

    ME specialists as those mentioned above were not consulted, nor was the patient association. The ME Vereniging Nederland has filed a complaint with the Health Care Inspectorate.
    Shell, Merry and Valentijn like this.
  2. snowathlete


    "Viral infections should not be treated"

    What other illness in the world could you get away with that in the western world? It's pretty much the same in the UK too.
    Valentijn and SOC like this.
  3. Shell

    Shell Senior Member

    What kind of medical investigation refuses to look beyond basic bloodwork? There's a whole truck load of diseases that aren't picked up by basic bloodwork!
    And on what grounds should viral infections not be treated?

    The Netherlands have a shockingly bad reputation for killing off the elderly the very sick and openly insisting on killing off disabled babies. (The UK isn't much better and is quickly catching up down that slope).
    It looks like any way to deny health care is worth a try.
  4. maryb

    maryb iherb code TAK122

    It exactly the same stance as NICE - The Nederlands are very much influenced by the UK - Wessley's tainted talons have spread his psych theories all over Europe and the USA. He's done a thorough job up to now, we desperately need some serious research findings identifying the cause of this illness to stop them once and for all.
  5. We've had our own Wessely in Gijs Bleijenberg. He retired right after completing that CFS guideline. Ruling from beyond the grave, one could say.

    But our biggest problem is the Ministry of Health, that denies our existence and even actively sabotages patient advocacy. They see to it that people like Bleijenberg get funded and others don't.
    Valentijn likes this.
  6. Valentijn

    Valentijn Senior Member

    I'm amazed at how hard it is to find a Dutch doctor that will deal with my ME-related problems at all. GP tries, but doesn't have the time or ME experience, and various specialists have been useless - the last one was a neurologist who assured me that drugs can't help me, only GET. So I can't get a helpful drug covered by insurance because it's an ADHD drug which is more expensive than the basic ADHD drug - no matter that I don't take it for ADHD - and that would require a specialist to sign off on it for it to be covered.

    Oh well, at least the drug costs one-third as much in the Netherlands as it does in the US :thumbsup:

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