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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ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

Discussion in 'Petitions' started by MEisnotMUPS, May 7, 2016.

  1. sjaakafhaak

    sjaakafhaak

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    Netherlands
  2. bspg

    bspg Plant Queen

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    Signed!
     
    MEisnotMUPS, AndyPR and Hutan like this.
  3. AndyPR

    AndyPR Senior Member

    ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment.

    Among ME patients there is no public support for a Dutch Health Council Committee with members denying ME as a chronic, complex, multisystem disease (ICD G93.3) or equating it to “MUPS”, (Medically Unexplained Physical Symptoms), a functional syndrome, a somatoform disorder (ICD F45), neurasthenia (ICD F48) or unexplained fatigue (ICD R53).
    https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

    You can sign from any country, and anonymously, but don't forget to click on the confirmation link in your email after you sign so that your signature registers.

    Now 8,283 signatures.
     
    MEisnotMUPS likes this.
  4. MEisnotMUPS

    MEisnotMUPS

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    AndyPR likes this.
  5. bombsh3ll

    bombsh3ll Senior Member

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    Signed x
     
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  6. Jo Best

    Jo Best Senior Member

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    Shared again.
     
    dangermouse and AndyPR like this.
  7. AndyPR

    AndyPR Senior Member

    ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment.

    Among ME patients there is no public support for a Dutch Health Council Committee with members denying ME as a chronic, complex, multisystem disease (ICD G93.3) or equating it to “MUPS”, (Medically Unexplained Physical Symptoms), a functional syndrome, a somatoform disorder (ICD F45), neurasthenia (ICD F48) or unexplained fatigue (ICD R53).
    https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

    You can sign from any country, and anonymously, but don't forget to click on the confirmation link in your email after you sign so that your signature registers.

    Now 8,385 signatures.
     
    Jo Best, mango and Valentijn like this.
  8. thijs

    thijs

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    Is there any news about the progress of this report?
     
  9. AndyPR

    AndyPR Senior Member

    ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment.

    Among ME patients there is no public support for a Dutch Health Council Committee with members denying ME as a chronic, complex, multisystem disease (ICD G93.3) or equating it to “MUPS”, (Medically Unexplained Physical Symptoms), a functional syndrome, a somatoform disorder (ICD F45), neurasthenia (ICD F48) or unexplained fatigue (ICD R53).
    https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

    You can sign from any country, and anonymously, but don't forget to click on the confirmation link in your email after you sign so that your signature registers.

    Now 8,851 signatures.
     
  10. Jo Best

    Jo Best Senior Member

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    From Invest in ME Research July newsletter (received by email, not yet uploaded to website).

    Petition to the Dutch Health Council


    [​IMG]

    Invest in ME Research invited the Dutch Health Council to the 2017 conference events in London - and, sharing much in common with UK establishment organisations, they did not reply.

    Perhaps this may get their attention.

    A Dutch petition -

    ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment
    https://meisgeensolk.petities.nl/?locale=en

    The Dutch Guidelines are based on NICE - and has been made part of a broader Medically Unexplained Physical Symptoms (MUPS) guideline.

    As the Dutch state - 'BPS proponents/Dutch PACE colleagues with vested interests, who are still advocating CBT/GET as safe and effective and as the only "evidence based" treatment, should have no place in deciding future health policy for ME patients and how to spend valuable research money.'

    The Dutch Health Council report will go to parliament and determine the care and research spending for the next decade - a similar corrupted scenario being shaped as was planned for the UK.

    The Dutch are suffering in the same way as UK patients by the negligence and flaws in establishment organisations.

    1200 signatures are needed to reach the goal of 10,000.

    https://meisgeensolk.petities.nl/?locale=en

    Photo: Bente Kubin

    (one can sign from any country with name or anonymous, but do not forget to click on the confirmation link in the email after signing)
     
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  11. MEisnotMUPS

    MEisnotMUPS

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    dangermouse, Jo Best and AndyPR like this.
  12. MEisnotMUPS

    MEisnotMUPS

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    Dear all, Dutch need your help. Please consider signing and sharing.

    To stop BPS proponents/Dutch PACE colleagues from hijacking ME and rebranding it as MUS, functional somatic syndrom, BDS, SSD or whatever they come up with.
    The influence of those who BPS proponents is huge. Like in the UK, it are these people who again and again are in policy making committees/decision positions.
    The Dutch Health Council has put several on a committee that is writing a advisory report to dutch Parliament.

    Please speak up on behalf of all of us.
    These BPS have huge conflicts of interests (still claim CBT/GET are safe, and effective/evidence based).
    We just want our lives back. That will not happen if those with vested interest are determining our future care...
    We cannot continue to go without proper care and have BPS proponents spread what is basically an unproven hypothesis, that is hampering all progress.

    Time for change, but we will need your help.
    Please. spread this link, we need 1103 signatures to reach the goal of 10,000
    Together we can do this, but we need your help!
    https://meisgeensolk.petities.nl/?locale=en
     
    dangermouse, Hutan, Marc_NL and 2 others like this.
  13. Marc_NL

    Marc_NL Senior Member

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    Signed and shared :woot:

    Edit:
    Now only 1100 to go
     
    Last edited: Aug 7, 2017
    MEisnotMUPS, dangermouse and AndyPR like this.
  14. MEisnotMUPS

    MEisnotMUPS

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    It would mean a lot if you would take 1 minute and be one of the remaining 1004 signatures we need to reach the goal of presenting 10,000 signatures to the Dutch Health Council. https://meisgeensolk.petities.nl/?locale=en

    This is what Invest in ME wrote about this petition in their July Newsletter

    Petition to the Dutch Health Council
    Invest in ME Research invited the Dutch Health Council to the 2017 conference events in London - and, sharing much in common with UK establishment organisations, they did not reply. Perhaps this may get their attention - https://meisgeensolk.petities.nl/?locale=en

    A Dutch petition - ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment

    The Dutch Guidelines are based on NICE - and have been made part of a broader Medically Unexplained Physical Symptoms (MUPS) guideline. As the Dutch advocates state –
    'BPS proponents/Dutch PACE colleagues with vested interests, who are still advocating CBT/GET as safe and effective and as the only "evidence based" treatment, should have no place in deciding future health policy for ME patients and how to spend valuable research money.'

    The Dutch Health Council report will go to parliament and determine the care and research spending for the next decade - a similar corrupted scenario being shaped as was planned for the UK.

    The Dutch are suffering in the same way as UK patients by the negligence and flaws in establishment organisations – and the apathy of government departments who should be demonstrating responsible management of the problem.

    https://meisgeensolk.petities.nl/?locale=en

    Please share and sign (you can sign from any country, anonymous if you want, just don't forget to click on the confirmationlink in your email after you sign, once you have done that your signature counts)

    Photo: Bente Kubin bente foto.jpg
     
  15. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Done.
     
    MEisnotMUPS likes this.
  16. eric_gladiator

    eric_gladiator Senior Member

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  17. JohnCB

    JohnCB Immoderate

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    I've just added mine to take it up to a round 9,000. The childlike pleasure in making it tick up from 8,999 has made my day.
     
  18. msf

    msf Senior Member

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    Damn, too late!
     
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  19. daisybell

    daisybell Senior Member

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    New Zealand
    Done..
     
    MEisnotMUPS likes this.
  20. MEisnotMUPS

    MEisnotMUPS

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    Hutan likes this.

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