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Dutch Health Council on ME/CFS tomorrow on national news

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

  1. Mattie

    Mattie Senior Member (Voting Rights)

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    Tomorrow at 20:00 on the "NOS Journaal" (dutch national news):
    An item on ME/CFS as the Dutch Health Council will publish their long awaited advice/guidelines on ME/CFS tomorrow. Also a radio item on this tomorrow morning between 06:00 and 09:30 on NPO1-radio, I have not yet found the exact starting time.

    I'll try to post the tv broadcast with subtitles the next day. (only if it's any good ;-)
     
    Last edited: Mar 18, 2018
    inox, Awol, Alison Orr and 31 others like this.
  2. Rick Sanchez

    Rick Sanchez Established Member (Voting Rights)

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    Havn't been this excited for ME/CFS news in a while! Fingers crossed.
     
    Jan, Simone, Joh and 8 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Nervous, but fingers crossed.
     
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  4. Grigor

    Grigor Established Member (Voting Rights)

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    I feel this one is very important for all of us. Like David Tuller said if it's any good then it could have an effect on the rest of Europe and world
     
    inox, Amw66, Jan and 16 others like this.
  5. Mattie

    Mattie Senior Member (Voting Rights)

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    Short radio interview with ME-patiënt Lisa Klaasen just aired on NPO-Radio 1 and that went well.

    Lisa did a great job explaining the illness, how it goes way beyond fatigue and what we expect from the Health Council today: get rid of CBT/GET.

    Interview below. (dutch)

     
    Last edited: Mar 19, 2018
  6. Mattie

    Mattie Senior Member (Voting Rights)

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    Dutch Health Council just published their guidelines.

    now also available: english summary, thanks @Effi
     

    Attached Files:

    Last edited: Mar 19, 2018
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  7. Mattie

    Mattie Senior Member (Voting Rights)

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    Summary:

    Conclusions and recommendations

    Scientific research on ME/CFS is needed to serve patients better. Meanwhile, it is essential that ME/CFS is a diagnosis that is made in practice, that patients’ disease symptoms are taken seriously and treated as well as possible. Their functional limitations must also be fully recognised in the assessment of claims on income and other provisions

    The committee recommends the following.

    • The Minister of Health, Welfare and Sport should commission ZonMw for a long-term, substantial research programme on ME/CFS. The research would primarily focus on substantiation of the diagnosis, pathogenesis and treatment of ME/CFS.

    • Those responsible for training and further education of healthcare providers should ensure that education and training highlight the serious, chronic, multisystem disease ME/ CFS and what healthcare providers can do for patients with this disease.

    • The Federation of University Medical Centres and the healthcare insurers should designate a few university medical centres that – in collaboration with patient representatives, other hospitals, GPs, rehabilitation centres, sleep centres and other healthcare providers in the region – will open an outpatient clinic for ME/CFS, with associated healthcare networks and research groups.

    • Medical disability assessors within the context of private and social disability insurance, the Social Support and Provision Act and the Long-term Care Act should recognise that ME/CFS is a serious disease that is accompanied by substantial functional limitations, and they should not regard a patient’s decision to forego CBT or GET as inadequate recovery behaviour.

    Edit: now available full executive summary in english as published by the dutch national health council: download PDF
    Thanks @Effi for posting link to this document.
     
    Last edited: Mar 19, 2018
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    :banghead:

    How many people are on the commission, Nattie? I'm wondering how big the majority was.
     
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  9. Mattie

    Mattie Senior Member (Voting Rights)

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    ...recognize that ME / CFS is a serious disease accompanied by substantial functional limitations and consider the choice of a patient to avoid CBT or exercise therapy NOT as 'inappropriate recovery behavior'.

    CBT and GET are not to be regarded as adequate treatments for ME / CFS.
    The choice to to refrain from CBT or GET should not lead to it judging that the patient is missing his chance of recovery or does not cooperate with his or her recovery.
     
    Last edited: Mar 19, 2018
  10. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

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    Yes, they say that patients are free to chose CBT and GET like therapies but patients cannot be forced to do this and if they don't they cannot be accused for "not cooperating".
     
  11. unicorn7

    unicorn7 Established Member (Voting Rights)

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    :)Yes!! I am just going to be excited!

    I think this is the best advise we could have realistically hoped for. It’s a good start!

    No forced cbt and get!

    Acknowledgement that ME is complex, multisystem and debilitating and therefore a right to get disability benefits

    Advise for medical centres, schooling of docters, biomedical research program:thumbup:
     
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Sorry to be cynical but the U.K. NICE guidelines currently say patients are free to choose but that is ignored in practice.
     
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  13. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

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    It's nice that the minority viewpoint of R.H. Wijbenga is already included in the appendix of the report, these are his points:
    • The advice differs from the request for advice
    • The advice does not state that ME is not a psychogenic or psychosomatic illness
    • The advice does not do justice to the seriousness of the disease
    • The advice doesn't give enough practical guidelines
    • The advice gives a too rosy picture of cognitive behavioral therapy
    • Also the advice does not take enough distance of graded exercise therapy
    • Pacing is ignored in the advice
    All in all: When patients say 'This is harming us', health professionals must listen

    Recommendations: connection with international biomedical research and knowledge is crucial
     
  14. Grigor

    Grigor Established Member (Voting Rights)

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    With English (Google translate)

     
  15. Andy

    Andy Committee Member

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    A few quotes giving us some more detail about the guidelines
    So not quite as good as we might have liked but certainly better than previously and I think this should prove useful in improving the NICE guidelines.
     
  16. Grigor

    Grigor Established Member (Voting Rights)

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    It's a step in the right direction for sure Too many BPS involved but still.
     
  17. FreeSarah

    FreeSarah Senior Member (Voting Rights)

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    I suppose if they’d gone any further than “not to be regarded as adequate” they would have had to say “we were wrong, very wrong, and culpable for any harm done”, which was never going to happen.

    This seems like a good start
     
  18. James

    James Established Member (Voting Rights)

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  19. Mattie

    Mattie Senior Member (Voting Rights)

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    NOS JOURNAAL, 19-03-2018 - 10:00
    Dutch National Television, daily news. English subtitles added.

     
    Last edited: Mar 19, 2018
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  20. dangermouse

    dangermouse Senior Member (Voting Rights)

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    Thanks for all the information on this @Mattie it’s appreciated.
     
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