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Dutch College of GP's removed ME-CFS guidelines from its website

Discussion in 'General ME/CFS News' started by Mattie, Oct 7, 2018.

  1. Mattie

    Mattie Senior Member (Voting Rights)

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    Quick and dirty (google) translation from:
    http://mecvs.nl/nieuws/richtlijn-cvs-uit-2013-geschrapt/

    Following the recent Dutch Health Council opinion on ME / CFS:

    The "Nederlandse Huisartsengenootschap (NHG)" (The Dutch College of General Practitioners ) has removed the 2013 multidisciplinary guideline from the database on the 'Guidelines and practice' page from its website. The reference to the NHG standard "SOLK" (somatically insufficiently explained physical complaints) has also been removed. With this, cognitive behavioral therapy (CGT) and graded exercise therapy (GET) for general practitioners are no longer the recommended treatments for ME and CFS.

    The patient organizations had informed the NHG that the CFS guideline was not up to date, both according to the guideline itself, which states that the revision was due in 2017, and in the light of the recent Health Council opinion on ME / CFS. The CFS Guideline does not correspond with what is stated in the Health Council's advisory report on the development of the disease, the typing as a multisystem disease, the diagnosis, the treatment and the socio-medical assessment.
     
    Last edited: Oct 7, 2018
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Well done to the Dutch patient organisations :thumbup::thumbup::thumbup:
     
  3. inox

    inox Senior Member (Voting Rights)

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    YAY! That's amazingly good news - it's like wathing the pace-imperium crumbling bit-by-bit real time :)

    Congratulations! :)
     
  4. Mattie

    Mattie Senior Member (Voting Rights)

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    From their website:
    Het Nederlands Huisartsen Genootschap (The Dutch College of General Practitioners) is the scientific society of Dutch general practitioners (GPs) with the mission to improve and to support evidence-based general practice.

    Over 95% of the GPs in the Netherlands (appr. 11,000) are member of the College. Activities of the College are mainly funded by their members. Additional financial support is provided by the Dutch umbrella organization of health insurers.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    Have they said why they removed, or what replaces them? Thanks for the info.
     
  6. Mattie

    Mattie Senior Member (Voting Rights)

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    No replacement as far as I can see.
    Searched their database in every possible way. Thats ok for me, I’d rather have my GP tell me he has no clue what to do instead of referring me to the BPS mafia.

    Edit: Forget to answer your first question Esther:
    They have made no official statement about this as far as I know.
    Patient organisation just reported the guidelines to have been removed from the NHG website.
     
    Last edited: Oct 9, 2018
  7. Mattie

    Mattie Senior Member (Voting Rights)

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    So the Dutch College of General Practitioners removed all guidelines.
    Leaving us without guidelines, but fear not, we also have the "Dutch Federation of Medical Specialists"
    and they have their own guidelines database, mostly about what no to do and why not.

    On their site the desired and undesirable effects of pharmacological and immunological interventions to reduce fatigue and other complaints as well as limitations in patients with CFS are discussed.

    More can be read in reasonable english with Google Translate:
    https://translate.google.com/translate?hl=en&sl=nl&tl=en&u=https://richtlijnendatabase.nl/richtlijn/chronisch_vermoeidheidssyndroom_cvs/farmacologische_interventies_bij_cvs.html#uitgangsvraag

    Professional perspective

    For the efficacy of various drugs that have been tested for efficacy for CFS, there is no convincing evidence, while (serious) side effects can occur, so that net damage can occur. Advising such drugs would be contrary to the principle primum non nocere .

    -----------------

    So far so good,

    but further on in their website they state that:

    1. CBT is first choice in treatment
    2. GET is second

    https://translate.google.com/transl...syndroom_cvs/gedragsinterventies_bij_cvs.html

    So while our GP's removed the CBT/GET guidelines,
    our Medical Specialists still recommend it.
    Their guidelines have not been reviewed since 2013.

    Hopefully they will soon follow the Health Council recommendations.
     
    Last edited: Oct 9, 2018
    Hutan, mango, inox and 10 others like this.
  8. Lou Corsius

    Lou Corsius Established Member (Voting Rights)

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    It is exactly this guideline the GP's removed from their database because it is obsolete. It should have been evaluated in 2017 but it wasn't.
    So in fact the guideline is out of order, even when the specialists don't feel the need to evaluate the guideline.
     
    Inara, Luther Blissett, Hutan and 7 others like this.
  9. Mattie

    Mattie Senior Member (Voting Rights)

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    I emailed them.
    their answer comes down to: there is currently no taskforce available to review the guidelines.
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Maybe you could suggest they sub contract the review to a group of patients and ask M Vink to head it up :D
     
    Luther Blissett and Hutan like this.

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