Help Compile List of ME/CFS Charities Outside US

[Merry]

Right now we need info for the upcoming US contest Chase Community Giving, which begins the 6th of September, but this information would certainly be nice to have for future projects.

Here's what frenchtulip wrote (at post #79)
http://forums.phoenixrising.me/inde...ntial-chase-nominees.17798/page-4#post-287645


If individuals would like to take a country or continent, find the ME/CFS org's, URL's, and email addresses, that would be really helpful. Perhaps the individuals could also monitor the org's websites and/or Facebook pages to see if the Chase Contest info we will be sending gets posted. If not, we could perhaps post it on the organizations' Facebook pages as has been done in the past (Plan B).

There are various lists of ME/CFS org's. Here are two:
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS
http://www.cfsknowledgecenter.com/support-groups.php
If you know of others, would you please post.

I started on Australia tonight. I will be working on Australia and New Zealand. We may need to stick mainly to the English-speaking countries unless we can find translators.

 

[frenchtulip]

Thanks, Merry!

 

[user9876]

Right now we need info for the upcoming US contest Chase Community Giving, which begins the 6th of September, but this information would certainly be nice to have for future projects.

Here's what frenchtulip wrote (at post #79)
http://forums.phoenixrising.me/inde...ntial-chase-nominees.17798/page-4#post-287645


If individuals would like to take a country or continent, find the ME/CFS org's, URL's, and email addresses, that would be really helpful. Perhaps the individuals could also monitor the org's websites and/or Facebook pages to see if the Chase Contest info we will be sending gets posted. If not, we could perhaps post it on the organizations' Facebook pages as has been done in the past (Plan B).

There are various lists of ME/CFS org's. Here are two:
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS
http://www.cfsknowledgecenter.com/support-groups.php
If you know of others, would you please post.

I started on Australia tonight. I will be working on Australia and New Zealand. We may need to stick mainly to the English-speaking countries unless we can find translators.

In the UK there is the Tymes Trust (The Young ME Sufferers Trust)
http://www.tymestrust.org/

By Post

Tymes Trust
PO Box 4347
Stock
Ingatestone
CM4 9TE​

 

[Aileen]

I have a very large list of organizations with email, website, facebook and twitter as applicable but not on this computer. I guess I could email it to myself to get it on this one. It is in a table so I'm not sure if the whole thing could be uploaded here (doubtful) but I could probably figure out a way to do it in pieces. Going in for a colonoscopy tomorrow so I may be away for several days.

Just remembered, the reason I have all this info is because I was gathering it for cfsKnowledgeCenter's site. Go there for 2 lists -- support groups and worldwide links (tabs under the photo)

 

[frenchtulip]

Here is a list taken from another site. I think it is okay to post. I have tried to remove anything that looked like a private email address or phone no. Note: Some of the info below may not be current.

International

International Association for CFS/ME, 27 N Wacker Drive Suite 416, Chicago, IL 60606

Australia National

• Alison Hunter Memorial Foundation http://fresh-guild.com/ahmfsite/index.html

• ME/CFS Association of Australia Ltd mecfs@mecfs.org.au http://www.mecfs.org.au

AustraliaRegional

• CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth, Western Australia 6060, tel 61-09-483-6667

• Darwin ME/CFS Society

• ME/CFS Australia (Tasmania)

• ME/CFS Australia (SA) http://sacfs.asn.au

• ME/CFS Australia (Northern Territory) http://www.mecfs-vic.org.au/welcome-...hern-territory

• ME/CFS Society of Victoria , 23 Livingstone Close, Burwood, Victoria 3125, tel 61-3-888-8798, email cfs_society@3dis.com.au http://www.mecfs-nt.org.au

• ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South Australia 5001, tel 61-8-373-2110

• ME/CFS/FM Support Association QLD Inc http://www.mecfsfmq.org.au

• ME/CFS Society of New South Wales (ME/CFS Society of NSW), PO box 449, Crows Nest, NSW 2065 tel 61-2-439-6026, email mesoc@zip.com.au

• ME/CFS Society of WA (Inc) http://www.mecfswa.org.au http://www.me-cfs.org.au

• ME/CFS Syndrome Society of Queensland, PO Box 938, Fortitude Valley, Qld 4006, tel 61-7-3832-9744 email gportr@gil.com.au
• ACT ME/CFS Society, PO Box 717, Mawson, ACT 2607, tel 61-6-29-1984 http://www.mecfscanberra.org.au

Canada

• FM-CFS Canada http://fm-cfs.ca/support.html

• M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4, tel 1-613-563-1565, email info@mecan.ca

• The National ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, ON K2H 7V2 ag922@ncf.ca http://www.mefmaction.net

• Nightingale Research Foundation - 383 Danforth Avenue, Ottawa, Ontario K2A OE1, tel 1-613-728-9645 http://www.nightingale.ca/

• Invisible Disabilities Association of Canada http://www.nsnet.org/idacan

Europe

• European Society for ME (ESME) post@esme-eu.com http://esme-eu.com/

• European ME Alliance http://www.euro-me.org

Belgium

• Ms. Alice Vertomme, Dorp 7, 3221 Nieuw Rode

Denmark

• Dansk ME Forening, Sønder Alle 5, st.,dør 3 , 9500 Hobro, Denmark, Phone: +45 29 37 05 59, email: information@dmef.dk http:// www.dmef.dk

• ME/CFS Foreningen (Danish ME/CFS Association), Raadhustorvet 1 2.sal DK-3520 Farum. Tel 45 4495 9700 Mon, Wed, Thu 10:00-14:00 and Thursday also 16:00-18:00 - email: mail@me-cfs.dk http://www.me-cfs.dk/Forside

France

• Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie cfs-spid-asso@wanadoo.fr http://asso.nordnet.fr/cfs-spid/index.html

Germany

• Deutsche Fibromyalgie-Vereinigung (DFV) e.V., Postfach 1140, 74741 Seckach, Germany, tel: 00 62 92 / 92 87 58 or 00 62 92 / 92 87 61 email: fibromyalgie-fms@t-online.de http://www.fibromyalgie-fms.de/

• Foerderverein fuer CFS/CFIDS/ME-Erkrankte, Fatigatio e. V., Postfach 410261, D-53024 Bonn, tel 49 228 66-02-33, email fatigatio@t-online.de

• ME/CFS-Aktuell http://www.cfs-aktuell.de/
• Fatigatio e.V. Bundesverband Chronisches Erschöpfungssyndrom http://www.fatigatio.de/ email: info@fatigatio.de

Italy

• C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine cfs@cro.it

• CFS Italia, email: amministrazione@cfsitalia.it http://www.cfsitalia.it/

• Sindrome de Stanchezza Chronica (Chronic Fatigue Syndrome) http://www.salutemed.it/cfs

Malta

• ME Sufferers Malta, PO Box 25, Pieta, PTA 1310, Malta http://www.mesufferersmalta.org/

Netherlands

• Chronisch Vermoeidheid Syndroom (ME Stichting), Robert Scottsstraat 4, 1056 AX Amsterdam, tel 31 (0) 20-6895162 (maandag, woensdag, vrijdag 10-12 uur) http://www.me-cvs-stichting.nl/

• ME Fonda, c/o Hanneke Los, Pres Kennedylaan 745, 1079 MR Amsterdam, tel 31 020 6445566, email mef@xs4all.nl

• ME Lobby, c/o Marc Fluks, de Bosch Kemperpad 136, 1054 PM Amsterdam, tel 31 020 618995, email melobby@dds.nl
• ME/CVS Vereniging http://www.me-cvsvereniging.nl/ email: reactie@me-cvsvereniging.nl
• ME-Platform http://www.me-platform.vuurwerk.nl/ email: ME-Platform-beheer@reijenga.xs4all.nl

Norway

• Norges Myalgisk Encefalopati Forening, Eikevien 96A, 1345 Osteras, tel 97-2-249879 - http://www.me-forening.no/index.php Many are following developments here: ME/CFS News Service from Rutts tankespinn blogger: http://merutt.wordpress.com/

Spain

• Fibromyalgia and Chronic Fatigue Syndrome Foundation, Dr Anna Cuscó - Executive President, Calle Joan Güell, 184 Local 27, 08028 Barcelona, Spain http://www.fundacionfatigo.org/

• Sindrome de Fatiga Cronica http://www.sfc-em-investigacion.com/index.php

Sweden

• Riksforeningen for ME-patienter (Swedish Assn of ME Patients), Box 1326 251 13 Helsingborg, tel 46 42-18-22-67 info@rme.nu http://www.rme.nu/

Switzerland

• Verein CFS Schweiz, CH-8000 Zürich, Schweiz, Tel: +41 78 616 96 80 http://www.verein-cfs.ch

India

• ME India http://www.meindia.org/

New Zealand

• Associated New Zealand ME Society, PO Box 36-307, Northcote, Auckland, email info@anzmes.org.nz, tel +64 (09) 269 6374 http://www.anzmes.org.nz/ For the most recent information about local support groups, please see: http://www.anzmes.org.nz/support.htm

South Africa

• ME Association of South Africa, Arlene Vermaak, PO Box 1802, Umhlanga Rocks, 4320, South Africa

UK

• Action for M.E., PO Box 1302, Wells, Somerset BA5 2 WE, tel 01749 67077 email info@afme.org.uk http://www.afme.org.uk

• 25% ME Group enquiry@25megroup.org http://www.25megroup.org

• Association of Youth with ME (AYME), 5 Medland, Woughton Park, Milton Keynes MK6 3BH, tel 01908 691635 email ayme@btinternet.com http://www.ayme.org.uk

• CFS Research Foundation cfsresearch@btconnect.com http://www.cfsrf.com

• Invest in ME info@investinme.org http://www.investinme.org/

• MEActionUK http://www.meactionuk.org.uk

• The ME Association, Box 8, Stanford-1e, Essex 2217 8EX, tel 01749 Advice line -1-4pm 44-0375-361013 http://www.meassociation.org.uk Advice line -1-4pm 44-0375-361013 meconnect@meassociation.org.uk For information on local groups in the UK, see: http://www.meassociation.org.uk/index.php?option=com_content&view=category&id=106&Itemid=204

• The National ME Centre http://www.nmec.org.uk

• ME North East http://www.menortheast.org

• ME Research UK meruk@pkavs.org.uk http://www.meresearch.org.uk/index.html

• MESH Nottingham http://meshnottm.limewebs.com/

• Welsh Association of ME and CFS Support http://www.wames.org.uk
• ME Research UK http://www.meresearch.org.uk/index.html meruk@pkavs.org.uk
• Blue Ribbon for the Awareness of ME info@brame.org http://www.brame.org/
• Tymes Trust http://www.tymestrust.org/contactus.htm

Ireland

Irish M.E. Trust info@imet.ie http://www.imet.ie/

 

[Enid]

Great work frenchtulip - that is good to see in one place and thanks Merry for starting.

 

[Merry]

Here is a list taken from another site. I think it is okay to post. I have tried to remove anything that looked like a private email address or phone no. Note: Some of the info below may not be current.



Thanks, frenchtulip. What is the plan for contacting organizations outside the US? Would you like them notified immediately that the contest is coming up (with a link to Chase Community Giving website), emphasizing how much money is at stake? Or do you want to wait until it's been established which ME/CFS organizations are in the contest? Contact the organizations more than once, if possible? And you'd like volunteers also to monitor organization Facebook pages to see if contest information is posted there? Will your Facebook fundraising group monitor ME/CFS organization Facebook pages?

Edit: Sorry. I don't know why the above is showing up in italics -- no luck removing the italics.

 

[frenchtulip]

Great questions, Merry! Let me run some of these questions by the admin. group on FB. I tend to think it would be good to have a trial run with the email approach and let org's know that the contest--worth potentially very big bucks--is approaching. What does everyone else think? I have thought it might be a good idea to post on co-cure as well. It might be easier for the FB Fundraising Group members to monitor the orgs' FB pages. Good point! Thanks.

 

[Merry]

Great questions, Merry! Let me run some of these questions by the admin. group on FB. I tend to think it would be good to have a trial run with the email approach and let org's know that the contest--worth potentially very big bucks--is approaching. What does everyone else think? I have thought it might be a good idea to post on co-cure as well. It might be easier for the FB Fundraising Group members to monitor the orgs' FB pages. Good point! Thanks.

Ok, thanks, frenchtulip. I am willing to email organizations. I could start with Canada unless someone else here on PR -- a Canadian citizen perhaps? -- would like to contact Canadian organizations.

I'll wait a few days in case you have further suggestions.

 

[taniaaust1]

AustraliaRegional

• CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth, Western Australia 6060, tel 61-09-483-6667

• Darwin ME/CFS Society

• ME/CFS Australia (Tasmania)

• ME/CFS Australia (SA) http://sacfs.asn.au

• ME/CFS Australia (Northern Territory) http://www.mecfs-vic.org.au/welcome-...hern-territory

• ME/CFS Society of Victoria , 23 Livingstone Close, Burwood, Victoria 3125, tel 61-3-888-8798, email cfs_society@3dis.com.au http://www.mecfs-nt.org.au

• ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South Australia 5001, tel 61-8-373-2110

The "ME/CFS Society of South Australia" is the same as the ME/CFS Australia (SA)... so is appearing twice on that list.

 

[Cort]

It took us a little while but we've submitted our application and our profile page should show up shortly. We'll soon begin a campaign to support PR and other ME/CFS organizations to win the big bucks

 

[frenchtulip]

It took us a little while but we've submitted our application and our profile page should show up shortly. We'll soon begin a campaign to support PR and other ME/CFS organizations to win the big bucks

That's great, Cort! Thanks for letting us know.

 

[Cort]

That's great, Cort! Thanks for letting us know.

Thanks...Among other things we've been waiting for guidance from Chase on the proper financial documents to attach...it took weeks...

 

[Merry]

Thanks...Among other things we've been waiting for guidance from Chase on the proper financial documents to attach...it took weeks...

Sorry for trouble, Cort. I hope you'll get some money for your efforts. At the very least, you should end up with a share of the $2.5 million grant.

 

[Merry]

Updated info on Canadian organizations:

FM-CFS Canada
website: fm-cfs.ca
email: office@fm-cfs.ca

ME Association of Ontario
website: www.meao.ca
email: info@meao.ca

The National ME/FM Action Network
website: mefmaction.com
email: mefminfo@mefmaction.com

Nightingale Research Foundation
website: www.nightingale.ca
email: info@nightingale.ca

Invisible Disabilities Association of Canada
website: www.nsnet.org/idacan
email: idacan@ns.sympatico.ca


These organizations have now been notified of the upcoming Chase Community Giving Contest

 

[Merry]

Updated info on UK organizations:

Action for M.E.
website: http://afme.org.uk
email: info@afme.org.uk

25% ME Group
website: http://www.25megroup.org
email: enquiry@25megroup.org

Association of Youth with ME (AYME)
website:http://www.ayme.org.uk
email: info@ayme.org.uk

CFS Research Foundation
website: http://www.cfsrf.com
email: cfsresearch@btconnect.com

Invest in ME
website: http://www.investinme.org.uk
email: info@investinme.org

MEActionUK
website: http://www.meactionuk.org.uk
email:?

The ME Association
website: http://www.meassociation.org.uk
email: meconnect@meassociation.org.uk

The National ME Centre
website: http://www.nmec.org.uk
email: nmecent@aol.com

ME North East
website: http://www.menortheast.org
email: info@menortheast.org

ME Research UK
website: http://www.meresearch.org.uk/index.html
email: meruk@pkavs.org.uk

MESH Nottingham
website: http://meshnottm.limewebs.com
email: meshnottm@gmail.com

Welsh Association of ME and CFS Support
website: http://www.wames.org.uk
email: helpline@wames.org.uk

Blue Ribbon for the Awareness of ME
website: http://brame.org
email: info@brame.org

Tymes Trust
website: http://tymestrust.org/contactus.htm
email: send via contact box at website


These organizations have been contacted about the Chase Community Giving Contest except for two. The ME Association I was told does not participate in fundraising for other organizations, and I when I clicked on the email link at the MEActionUK website, what came up was a Google sign in page.