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CFS/ME Organisations

Discussion in 'Patient Data Repository & Treatment Review Project' started by taniaaust1, Jun 26, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

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    Organisations

    Organisations and support groups can be invaluable for those with CFS as well to those who still are seeking an official diagnoses. CDC research has put the number that remain undiagnosed in America at 80% [1]. This is due in part that many doctors are still reluctant to give diagnoses due to lack of knowledge. For many, CFS organisations may be the first contact those with CFS may have for advice.

    * Like the whole CFS issue of what defines CFS and what CFS is, controversy surrounds some CFS organisations.

    AMERICA
    CFIDS Association of America www.cfids.org *
    International Association of CFS/ME www.iacfsme.org
    R.E.S.C.I.N.D. www.rescindinc.org
    P.A.N.D.O.R.A www.pandoranet.info
    M.E. Society of America http://www.cfids-cab.org/MESA/
    National CFIDS Foundation www.ncf-net.org


    AUSTRALIA
    ME/CFS Association of Australia Ltd www.mecfs.org.au
    Alison Hunter Memorial Foundation http://fresh-guild.com/ahmfsite/index.html
    ME/CFS Australia (SA) http://sacfs.asn.au
    ACT ME/CFS Society Inc www.mecfscanberra.org.au
    ME/CFS Society of NSW www.me-cfs.org.au
    ME/CFS Australia (Victoria) www.mecfs-nt.org.au
    ME/CFS Australia (Northern Territory) www.mecfs-vic.org.au/welcome-mecfs-australia-northern-territory
    ME/CFS/FM Support Association QLD Inc www.mecfsfmq.org.au
    ME/CFS Society of WA (Inc) www.mecfswa.org.au
    Darwin ME/CFS Society
    ME/CFS Australia (Tasmania)


    CANADA
    Nightingale Research Foundation www.nightingale.ca
    FM-CFS Canada http://fm-cfs.ca/home.html
    Invisible Disabilities Association of Canada www.nsnet.org/idacan
    National ME/FM Action Network http://www.mefmaction.net/



    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/welkom-bij-de-me-cvs-vereniging
    ME Vereniging Nederland http://www.mevereniging.nl
    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)
  2. taniaaust1

    taniaaust1 Senior Member

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    Cort or whoever else is in charge with the wiki ..Is this page idea okay?. I figured that this is along same kind of line as the good doctor list which was wanted.

    i dont know in what area a page like this would go in?? so it's in wrong area i think. I think the heading "ME/CFS Organisations and Support Groups" would of been better, but i cant see how headings can be changed.

    There is also fibromyalgia associations and chemical sensitive/allergies organisations too.. i dont know whether to mix all the coexisting illnesses support groups in together with the CFS ones or not but i guess they could be helpful to people too.
  3. Cort

    Cort Phoenix Rising Founder

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    Great idea - we will put it in another area - but its definitely a great topic for the WIKI. Thanks.
  4. taniaaust1

    taniaaust1 Senior Member

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    :) @ Cort
    ...

    i think by the time we get all the different states of the world CFS organisations on that page, its going to be a lot of info there.. we'd best put a support group page separate (a support group page would link in with this one throu the word "support" in that first paragraph). Anyone know how to remove the words support groups on that heading so it just says CFS/ME organisations?
  5. Min

    Min Senior Member

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    The top two organisations in the UK, AfME & AYME are renowned for their absolute support of the Wessely school of thought that M.E. is a mild psychological disorder easily overcome by exercise, whilst giving only token lip service to the need for biomedical research. The research that AfME proposes uses the Oxford guidelines to select patients, who will therefore have not M.E., but mild psychological disorders.

    AYME is their junior organisation, with Esther Rantzen as their patron - she vigorously promotes the Lightning Process.

    AfME have no members, only subscribers to their magazine (although it refers to them as 'members')who, unlike the members of the 25% Group and the MEA, have no voting rights or AGMs.

    AfME gave their support to the FINE and PACE trials.

    AfME's new medical advisor runs the Liverpool CFS clinic that has been discussed on the forum here; the clinic is run on the assumption that patients are somatizing.


    beware...beware.....
  6. V99

    V99 *****

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    Agree with Min 100%, beware of AFME. & AYME
  7. taniaaust1

    taniaaust1 Senior Member

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    nods..i thought i'd heard something like that. It seems strange thou if we are trying to do a compete list for public or whoever to leave major ones out.. i think thou we maybe should put something next to the controversional organisations, with some kind of paragraph at the very bottom of the lists which talks about why certain groups are contraversional.
  8. taniaaust1

    taniaaust1 Senior Member

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    i feel like ive kind of mumbled my way throu trying to explain the controversy without sounding bias.. someone else probably can put it far better than i can. Need a referance added for my quote "but many patients have been harmed while following these recommendations".
  9. taniaaust1

    taniaaust1 Senior Member

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    can anyone check this german CFS assoc. out to see if it looks ok to put up, for some reason my google toolbar which translates the others wont translate this http://www.fatigatio.de/
  10. Min

    Min Senior Member

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    I agree with you
  11. Tuha

    Tuha Senior Member

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    Do you still work on this? Its a bit pitty that I didnt see it before. I did a similar project for myself. i wanted to do a big cooperation with a lot of CFS organisations, forums, support group in all over the world so I started to look for CFS web sites, facebook sites and forums. Now I have around 40 facebook sites, 50 web sites, forum sites. would it be usefool for you?
  12. taniaaust1

    taniaaust1 Senior Member

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    Hi Tuha.. Wiki is for everyone and everything on it is up to date, i always check before adding a link .. yeah more organisations would be handy, i am trying to get just the big CFS proper organisations (countries and states) on this list. ..

    Some of that other info could go onto another page so things dont get too messy .. eg all the different CFS forums would be a VERY HANDY piece of info and could have own wiki page. That would be handy for some of the advocacy for people getting in touch with the other forums and a big help for many here i think.

    Would you like to start up a CFS forums page? this would really help with project ENOUGH that is being started up

    Have you got any proper CFS organisations to add to this page? If you have please do..
  13. taniaaust1

    taniaaust1 Senior Member

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    Tuha. if you arent sure about putting something on the wiki yourself.. feel welcome to put in in this forum and i'll add it if i think it fits into that list (if it doesnt.. we just can form another kind of list). Im really interested if any other state or countries orgs are on your list. There are many countries i know im still missing there and no doubt some main organisations too.
  14. taniaaust1

    taniaaust1 Senior Member

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    ??????? - syndrome
    ???????? - chronic
    ????? - fatigue
    ??????? ?? ?????????? ????? (chronic fatigue syndrome .. in Bulgarian.. hopefully i can use it to find an org. there later)
  15. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands
    For the Netherlands (Europe), please list:

    ME Vereniging Nederland (www.mevereniging.nl)

    Note that we and many other organizations do not consider ME and CFS to be the same thing, at all.
  16. Clodomir

    Clodomir In hibernation mood

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    Belgium

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