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Australian ME/CFS History and Events

Discussion in 'Patient Data Repository & Treatment Review Project' started by Melodie, Aug 28, 2010.

  1. Melodie

    Melodie Guest

    Please refer to the original Australian CFS/Me History and Events Wiki

    (Cort tried to enable Tania and Melodie permissions to fix the wiki up. This did not work and messed up permissions for Melodie. She is unable to post, receive or send PMs but can edit the wiki.)
  2. Melodie

    Melodie Guest

    Tania's Notes from the original history and events page:

    We are trying to secure both Dr Byron Hyde and Professor De Meirleir for an education session or maybe two education sessions to GP'S, medical academics/researchers throughout Victoria. A few relevant senior/exec level government health advisors, minister will also be invited

    ME/CFS Vic have partnered for the first time with the GP Divisions of Victoria to bring this education session to the medical community of Victoria. Advertising will get to every GP in Victoria. Me/Cfs Vic will also be advertising widely through medical schools etc, this will take quite a bit of office and staff time over the next few weeks to strategically manage and maximize the impact of the event/s,so please leave phone messages if we do not answer immediately, we will always return your call just as soon as we can

    Partnering with GPVic is a huge milestone for ME/CFS and for ME/CFS Vic. Having GPVic actively support the session/s allows for a high level of credibility for the speakers and also the condition ME/CFS amongst the medical community. We expect a very good turn out. We also have senior/exec government health policy advisers who are interested in attending
    im just sticking that here for the time being.. i want to add it to a time line for groundbreaking CFS/ME events in Australia. This GP divison partnering with ME society for the first time to help bring more education to our doctors over here. i think is special event.


    Quote Originally Posted by Melodie View Post

    To link a word to a URL, highlight the word, then click on the "link" icon above it is a picture of a globe with chain links at the bottom. the window opens where you past the URL (that you already copied from the site).


    EUROPE
    European Society for ME (ESME) http://esme-eu.com/
    European ME alliance www.euro-me.org
    Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie http://asso.nordnet.fr/cfs-spid/index.html
    Associazione Italiana Sindrome da Stanchezza Cronica www.salutemed.it/cfs
    ME/CFS Foreningen www.me-cfs.dk/Forside
    Irish ME/CFS Association http://www.activelink.ie/node/389
    Irish M.E. Trust (I.M.E.T) http://www.imet.ie/
    ME and Disability Support Group http://www.steungroep.nl/index.php/home/organisatie
    ME/CVS Vereniging http://www.me-cvsvereniging.nl/welko...cvs-vereniging
    The CFS - Netherlands Foundation http://www.me-cvs-stichting.nl/
    Norges ME-Forening http://www.me-forening.no/index.php


    NEW ZEALAND
    Associated New Zealand ME Society www.anzmes.org.nz


    UNITED KINGDOM
    ME Research UK (MERUK) http://www.meresearch.org.uk/index.html
    MEActionUK www.meactionuk.org.uk
    Association of Young People with ME www.ayme.org.uk *
    Action for ME www.afme.org.uk *
    CFS Research Foundation www.cfsrf.com
    The ME Association www.meassociation.org.uk
    ME North East www.menortheast.org
    The National ME Centre www.nmec.org.uk
    The Young ME Sufferers Trust www.tymestrust.org
    25% ME Group www.25megroup.org
    Welsh Association of ME and CFS support www.wames.org.uk
    Invest in ME www.investinme.org


    * indicates Organisations in which involve controversy


    * Controversy Related To Support Organisations

    This is expecially an issue in the UK as many disagree with the Wessley school of thought which revolves around CFS being a psychological disorder and in which CBT and GET are often the only two treatments recommended with other treatments highly discouraged. Both the main UK organisations AFME & AYME (the AFME junior organisation) are quite supportive of the Wessley school of thought but many patients have been harmed while following these recommendations.

    Many UK patients have been treated as they are somatizing and psychological instead of biomedical research is usually undertaken. Also there is the issue of AFME use of the Oxford CFS guidelines to select study participants.

    References
    1. www.cdc.gov/cfs/cfsbasicfacts.htm
    ........
    please add your states CFS associations to this! (go to edit at top of this page, it will automatically put the color on any links)"

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