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)
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)