Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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On Monday March 19 public presentation of ME report Dutch Health Council

Discussion in 'General ME/CFS News' started by Lou Corsius, Mar 18, 2018.

  1. Lou Corsius

    Lou Corsius

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    On Monday March 19 2018 the long awaited report of the Dutch Health Council will be made public. The national news broadcast organisation (NOS) will pay attention to this fact. We hope there will be an important breakthrough, Our hope is that they will acknowledge ME is a physical disease. In that case we can proceed toward biomedical research and a biomedical treatment, as should have been the case 20-30 years ago. It will be important to distinguish clear definitions of the different (sub?) groups of patients. Only then scientific research will make sense.
     
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  2. boombachi

    boombachi Senior Member

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    I await with baited breath. Are we expecting it to be positive? Are the people involved trustworthy?
     
  3. Gijs

    Gijs Senior Member

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    There is no breakthrough. It will be CBT and some GET as always.
     
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  4. Sundancer

    Sundancer Senior Member

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    I do not know whether to hope, or to despair, I'll wait and see tomorrow.
    thanks for posting, I did not have the courage for that

    David Tuller has written a blog in which he said he had read the draft which looked positive
    http://www.virology.ws/2018/03/12/trial-by-error-the-dutch-review-my-trip-bristols-silence/

    this mister Knoop has left the committee in the first week of march, he's a staunch believer in BPS bullshit. I'm not sure about the rest of them.

    as said, tomorrow we know some more.

    but as far as i understand, it is only an advice / report. Even when it would be positive, until that is made into a protocol for GPs and other doctors may take much time again.

    but I find, I do have hope
     
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  5. soofke

    soofke

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    Last edited: Mar 19, 2018
    CFS_for_19_years, Joh and boombachi like this.
  6. Sundancer

    Sundancer Senior Member

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    it looks good to me, sure, more had been better but as we all know. Change comes slow. It feels like a good step for me. Most of the Dutch papers gave good summaries of the report ( but not the Trouw)

    To me the most urgent omissions are nicely summarized at the end by R.H.Wijbenga

    The insuranceguys ( for when you need money because you're ill) are already putting there foot down I see...
    https://www.nvvg.nl/nieuws/nieuws-n...efinitieve-advies-gezondheidsraad-over-mecvs/

    we'll wait and see what happens
     
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  7. Sundancer

    Sundancer Senior Member

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    Dutch patients are differing in their assessment of the new Report from the health council.
    http://www.mevereniging.nl/gezondheidsraad-schaf-ziektediagnose-me-af/


    I've read the report, twice. And sure, it could be better, decidedly. But i think this is just the best we could hope for. Much is now depending on what will be done with it. How the text will be interpreted and used...

    The text is not clear enough about it being a physical disease, it hints at it.
    It does not do away with CBT, but patients cannot be forced to follow it.

    It does do away with GET, but also remarks on the fact that GET is not being used in Holland (??????) maybe it is not called that, but every therapy that tells the patient to do more and more, regardless of what his body tells him is GET.

    But seeing that many of the BPS crowd were in that committee, they did put their names under this text, ( except for Knoop that is)

    we'll see what happens in the next months.

    I'm very happy to see that almost all Dutch papers/telly etc. have brought it as an item in a way that felt positive for me. That will hopefully bring awareness in the population about ME being a real illness.

    Paradigm-shifts necessarily go slow
     
  8. Cort

    Cort Phoenix Rising Founder

    This is amazing for this former bastion of CBT

    "As for CBT, the draft noted that “a small majority” of committee members believed it could be helpful for some patients. But those in this group also acknowledged that patients also reported having been harmed by the approach, and they suggested that the treatment should be pursued with care. The other committee members objected to any use of the kind of CBT designed for ME/CFS, in part given the therapy’s reliance on the theory of misguided illness beliefs. In any event, this split decision was hardly a full-throated endorsement of CBT."
     
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  9. Sundancer

    Sundancer Senior Member

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    Yes, those are the words of Tuller, bless him!!

    that small minority were the BPS-fans, they are pivotal for the ' care and therapy' for patients here. To me it is a wonder that they signed it at all. Only Knoop left.

    But how it is gonna work out, that is the question, the formulating is ambigue, it can ( and will) still be twisted in ways we do not want. There is talk of expertise centres, what expertise?? The only expertise we have are the BPSguys...

    and at the time I'm writing this, our only adequate doctor ( Visser, a cardiologist) still does not know whether he will be judged unfavorably because he intervened in the case of an adolescent patient who was threatened to be put out of his parental home and care.

    and only last week i read on twitter that again a child is threatened to be removed from her home.
    It's a typical dutch piece of writing, give and take and do not become too clear in your words.... poldering.

    Fitnet is still promoted etcetra

    don't get me wrong, I'm not pessimistic, I'm happy, this is as much as we could have hoped for.. But we have to keep onto the ball, were not there yet.
    It's a good first step, now the rest of the way

    ,
     
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  10. Lou Corsius

    Lou Corsius

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    Prof Knoop Trouw (Dutch newspaper) 24 March 2018: between your ears is your body! What does this anatomical insight tell us about his research?
     

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