Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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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. AndyPR

    AndyPR Senior Member

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    AndyPR Senior Member

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    AndyPR Senior Member

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    AndyPR Senior Member

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  5. Dechi

    Dechi Senior Member

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    Done.
     
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  6. AndyPR

    AndyPR Senior Member

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    AndyPR Senior Member

  8. MEisnotMUPS

    MEisnotMUPS

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    Anil van der Zee, a Dutch ME patient with Severe ME, and a former prof dancer, has created a beautiful ME Awareness project. You can watch him dance here before he got sick:

    Anil has asked friends, former colleagues and fellow artists to help raise awareness! And they are !! See for example this moving video from a former dancer and friend of Anil

    She says: Inspiration for this video was the thought: What would I miss about my live if I was very sick, isolated and alone.The people I love, places I go to, music and dance.Some parts I dance without music to emphasise the loneliness in silence.

    https://www.facebook.com/mendy.deboerkunz/videos/vb.100002192557790/1328328330583573/?type=2&theater

    Anil asks people to join his ME Awareness movement. What can you do?

    1. He asks everyone to sign the Dutch petition and share it so that we can be heard https://meisgeensolk.petities.nl/?locale=en
    Guys we need 2700 more signatures to reach 10,000, please sign and share !!

    2. Watch all the moving video's and creative projects from Anil's friends that are raising awareness for ME on the special FB page: https://www.facebook.com/undauerMEArt2cureME/?fref=ts

    3. Join !! read here how: http://anilvanderzee.com/undauer-eng/
     
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  9. Izola

    Izola Senior Member

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    Signed
     
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  10. AndyPR

    AndyPR Senior Member

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  11. MEisnotMUPS

    MEisnotMUPS

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    Dear all, The Dutch need 2522 signatures to reach 10,000.
    The petittion closes soon after ME Awareness Month.
    That means there a only about 2 weeks left.

    Stop the influence of the BPS model
    Stop ME being rebranded as the non-exsisting diagnosis "MUS" or "MUPS" (medically unexplained (physical) symptoms)
    Stop those with vested interests in CBT/GET / BPS proponents / Dutch PACE colleagues influencing health care policy for ME.

    The Dutch Health Council, which includes Dutch PACE colleagues, involved in FITNET-UK, is writing an advisory report on ME to Dutch Parliament. This will have a huge influence on how this illness is perceived in the coming decade. WE cannot wait another decade for change.

    Please help and share
    https://meisgeensolk.petities.nl/?locale=en
     
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  12. AndyPR

    AndyPR Senior Member

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  13. MEisnotMUPS

    MEisnotMUPS

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    we need 2496 signatures to reach 10,000 signatures. Please help stop the reclassification of a serious chronic complex multi-system illness as MUS/MUPS

    anyone from any country can sign, anonymously if you want, just don't forget to click on the confirmationlink in your email after you sign

    https://meisgeensolk.petities.nl/?locale=en
     
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  14. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    http://www.psychosomatika-cls.cz/wp-content/uploads/2016/09/Newsletter_EAPM_December_2016.pdf

    EAMP Newsletter 2016

    4. Scientific initiatives:

    EAPM supports European COST Action Initiative
    Bernd Löwe

    Bodily Distress Syndromes including Somatic Symptom Disorders, Somatoform Disorders, Somatization Disorders, Medically Unexplained Symptoms or Functional Disorders are serious, complex and common medical problems of unknown aetiology and pathogenesis. Low recognition rates and long durations of untreated illness contribute to severe impairments in quality of life and high rates of chronic courses. To date, there is no agreement on medical guidelines throughout Europe, in some countries there are no guidelines or specialized treatment options at all. Current treatment is primarily symptom-oriented and based on medication which proved to have a modest effect on the symptoms. The health care costs associated with Bodily Distress Syndromes are comparable to depressive and anxiety disorders.

    Research efforts in the field of Bodily Distress Syndromes are currently fragmented and scattered across Europe. A common European research agenda and the inclusion of underrepresented European countries is urgently needed.

    The EURONET-SOMA initiative – a nationally funded conference series on two occasions in 2016 initiated by Bernd Löwe and his team from Hamburg, Germany - was an important first step to bring together leading experts in the field to provide the necessary framework for a European network. An expert panel of 29 experienced researchers from 9 European countries (the Netherlands, Denmark, Sweden, Norway, Latvia, Belgium, United Kingdom, Germany, and Russia) presented their recent research projects and state-of-the-art clinical procedures. The EURONET-SOMA participants agreed to jointly apply for a COST Action.

    The main aim of the proposed COST Action will be the establishment of a sustainable integrated network of researchers in Europe working in the field of Bodily Distress Syndromes. The network will tackle persisting research challenges arising from a lack of known aetiology and common understanding of Bodily Distress Syndromes, from deficits in diagnostic and treatment processes and high associated socio-economic costs. The network aims to foster a multidisciplinary and multinational pan-European network of research experts, clinicians, patients and policy makers. The EAPM strongly supports this initiative. Requests for further information may be directed to Isabel Winter, Administrator of the EAPM, contact@eapm.eu.com.

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

    http://www.rug.nl/research/portal/activities/euronetsoma(e42b9a9c-15b7-4611-aaaf-3fda851bf93f).html

    EURONET-SOMA

    Conference participation › Participation in conference

    Judith Rosmalen - Speaker, 3-Nov-2016

    Update Summerschool and MOOC
    Conference Title EURONET-SOMA
    Period 02/11/2016 → 04/11/2016
    City Hamburg
    Country Germany

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

    Full paper can be requested via ResearchGate

    In Press

    J Psychosom Res. 2017 Apr 7. pii: S0022-3999(17)30384-7. doi: 10.1016/j.jpsychores.2017.04.003. [Epub ahead of print]

    https://www.researchgate.net/public..._report_of_the_EURONET-SOMA_conference_series

    Weigel A1, Hüsing P1, Kohlmann S1, Lehmann M1, Shedden-Mora M1, Toussaint A1, Löwe B2; EURONET-SOMA Group.

    A European research network to improve diagnosis, treatment and care for patients with persistent somatic symptoms: Work report of the EURONET-SOMA conference series

    (...)

    "...Practitioners in psychosomatic medicine are faced with the new diagnosis of “Somatic Symptom Disorder” in DSM-5 [8] and the suggested “Bodily Distress Disorder” in ICD-11 [9,10] which both no longer exclude the existence of underlying medical conditions."

    "EURONET-SOMA successfully brought leading European experts in the field of persistent somatic symptoms together."

    "Suggestions to face this challenge included to synthesize current conceptual models, definitions and etiology models and to develop recommendations for further interdisciplinary and multi-method research. Furthermore, there was consent between the EURONET-SOMA experts about the urgent need for a common and interdisciplinary agreement on the diagnostic classification for persistent somatic symptoms. This includes a consent on practical, valid, and comparable measures to assess persistent somatic symptom diagnosis and severity across European countries as well as recommendations for core outcome domains for clinical trials on persistent somatic symptoms. From a treatment perspective prevention programs, personalized and targeted treatment programs as well as online and public health interventions are promising approaches but still in their infancies. It is a challenge to identify key risk and protective factors for the development and chronic manifestation of somatic symptoms as well as barriers to early treatment."

    "We believe that EURONETSOMA was an important first step and has the potential to further contribute to a common understanding of the terminology, conceptualization and management of persistent somatic symptoms as well as to obtain a fundamental etiological knowledge about the issue to increase the effectiveness of preventive approaches and early treatment interventions. In the long run, we hope to transfer knowledge regarding persistent somatic symptoms between different medical disciplines and clinical psychology as well as from research into clinical practice and make diagnostic procedures, treatment solutions and outcomes comparable across Europe. Thereby, we hope to prevent patients from iatrogenic harm due to unnecessary examinations and provide them with appropriate health care."

    (...)

    Participants of the EURONET-SOMA Group in alphabetical order

    Gunta Ancane, Marie Bendix, Manfred Beutel, Chris Burton, Francis Creed, Paul Enck, Per Fink, Lisbeth Frostholm, Harald Gündel, Peter Henningsen, Paul Hüsing, Chris Kenedi, Ksenya Khohlova, Maria Kleinstäuber, Sebastian Kohlmann, Willem J. Kop, Claas Lahmann, Marco Lehmann, Bernd Löwe, Ulrik Malt, Krzysztof Małyszczak, Alexandra Martin, Nadine Pohontsch, Winfried Rief, Judith Rosmalen, Joanna Rymaszewska, Heribert Sattel, Andreas Schröder

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

    References to MUS, PPS and IAPT service provision, conferences, reports and papers are collated in this thread:

    http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

    MUS, PPS services and integration into NHS primary care - what's happening across the UK?
     
    Last edited: May 19, 2017
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  15. 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 8,111 signatures.
     
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  16. MEisnotMUPS

    MEisnotMUPS

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    Please help the Dutch reach 10,000 signatures for this petition.
    Don't let the official diagnosis ME become a non diagnosis MUS/MUPS. (based on unproven BPS model/with ineffective CBT/GET as its main treatments). Patients have waited long enough, we need research, real care, and recognition of ME as a chronic complex multi-system disease.

    We need an additional 1889 signatures to reach our goal. With your help we can do it.
    https://meisgeensolk.petities.nl/?locale=en
     
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  17. AndyPR

    AndyPR Senior Member

    Now 8,174 signatures. The petition closes at the end of June.

    https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

    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).

    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.

    https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en
     
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  18. daisybell

    daisybell Senior Member

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    New Zealand
  19. MEisnotMUPS

    MEisnotMUPS

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    1825 signatures needed to reach 10,000

    Please help.
    The Biopsychosocial model has an influence on care for ME patients in the Netherlands that is hampering all progress.
    Dutch PACE colleagues insist you can recover with CBT/GET. And are now on Dutch Health Council Committee writing advisory report on ME.

    Please sign and share. https://meisgeensolk.petities.nl/?locale=en
     
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  20. MEisnotMUPS

    MEisnotMUPS

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    Can you please help the Dutch reach 10,000 signatures for their petition.
    1794 more signatures needed, just few weeks left.

    Please don't let ME be rebranded as "MUS" (medically unexplained symptoms), based on a BPS model that has never been proven. Enough is enough, how many more decades before we have access to real care ? In Europe and the Netherlands there is none!

    Please sign and share. https://meisgeensolk.petities.nl/?locale=en
     
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