• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Help Compile List of ME/CFS Charities Outside US

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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.
 

user9876

Senior Member
Messages
4,556
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

Senior Member
Messages
615
Location
Canada
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

Senior Member
Messages
760
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
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 Society of South Australia, PO Box 383, GPO, Adelaide, South Australia 5001, tel 61-8-373-2110
  • 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
Canada
  • M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4, tel 1-613-563-1565, email info@mecan.ca
Europe
Belgium
  • Ms. Alice Vertomme, Dorp 7, 3221 Nieuw Rode
Denmark
  • 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
Germany
  • 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
Italy
  • C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine cfs@cro.it
Malta
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
Norway
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/
Sweden
Switzerland
India
New Zealand
South Africa
  • ME Association of South Africa, Arlene Vermaak, PO Box 1802, Umhlanga Rocks, 4320, South Africa
UK
Ireland

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

Enid

Senior Member
Messages
3,309
Location
UK
Great work frenchtulip - that is good to see in one place and thanks Merry for starting.
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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

Senior Member
Messages
760
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

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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

Senior Member
Messages
13,054
Location
Sth Australia
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 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.
 

frenchtulip

Senior Member
Messages
760
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.
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
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.