ME/CFS and Long Covid charities/ organisations - International and National

[Hutan]

Added, thanks

 

[longcovidsos]

Could you please include our charity on your page - we are involved in the UK Covid Inquiry and are one of the leading Long Covid charities in the UK

https://www.longcovidsos.org/

Thanks!

 

[Hutan]

Welcome to the forum @Long Covid SOS! It's great to have you here. Certainly, adding you now. Done

 

[SNT Gatchaman]

Thank you for joining @longcovidsos

 

[Suffolkres]

I thought it would be useful to have a list of all the active international and national level ME/CFS charities and research foundations not specific to one research institution around the world.

We can add to it as we find them. Please post below with organisations and a website and contact email if they have them. For those organisations that we have a news thread for, I'll link to the relevant thread.

Work in progress

International/regional

• International Association for CFS/ME, IACFSME -- forum thread
• World ME Alliance -- https://worldmealliance.org/contact-us/ -- forum thread
• ME Action -- info@meaction.net
• European ME Coalition EMEC -- europeanmecoalition@outlook.com -- forum thread
• Long Covid Physio -- https://longcovid.physio/contact
• ME Global Chronicle
• Physios for ME -- forum thread
• European ME Alliance EMEA -- info@euro-me.org
• Open Medicine Foundation (OMF)

Australia - see also Australian regional ME/CFS and Long Covid charities/ organisations

• Emerge Australia -- ceo@emerge.org.au -- Forum thread
• Open Medicine Foundation Australia
• ME/CFS Australia -- info@mecfs.org.au

Austria

• WE&ME Foundation -- contact@weandmecfs.org -- forum thread
• Österreichische Gesellschaft Für ME/CFS -- contact@mecfs.at

Belgium

• 12ME -- info@12me.be
• Millions Missing Belgique -- info@millionsmissingbelgique.com
• Belgium ME/CFS Association -- me.vereniging@belgacom.net -- EMEA member

Canada - see also Canada regional ME/CFS and Long Covid charities/ organisations

• Millions Missing Canada -- millionsmissingcanada@gmail.com
• Open Medicine Foundation Canada
• Action CIND
• National ME/FM Action Network -- mefminfo@mefmaction.com

Croatia

• PrepoznajME -- meifibromialgija@gmail.com -- EMEA member

Czech Republic

• Neúnavní -- info@neunavni.cz -- WMEA member

Denmark

• Dansk Covidforening (Danish Covid Association) -- mail@covidforeningen.dk
• Foreningen for Myalgisk-Encefalomyelitis (Danish ME Association) -- sekretariat@me-foreningen.dk -- EMEA member
• MillionsMissing Denmark

Finland

• Suomen lääketieteellinen ME/CFS-yhdistys ry Medicinska föreningen för ME/CFS I Finland (Finnish Medical ME/CFS Association) -- admin@slme.fi -- EMEA member
• Finnish Association of CFS - Suomen CFS-Yhdistys

France

• Association Francaise du Syndrome de Fatigue Chronique, Appelation Internationale: EM/SFC -- me.asso.sfcf@gmail.com -- EMEA member
• Millions Missing France -- info@millionsmissing.fr

Germany

• ME/CFS Research Foundation -- contact@mecfs-research.org -- forum thread
• German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V.
• Fatigatio e.V. -- info@fatigatio.de EMEA member
• Lost Voices Foundation -- nicole.krueger@lost-voices-stiftung.org
• Long Covid Deutschland

Iceland

• Iceland ME/CFS Association -- mefelag@gmail.com -- EMEA member

Ireland

• Irish ME/CFS Association - info@irishmecfs.org
• ME Advocates Ireland -
• Irish ME Trust -- info@imet.ie -- EMEA member

Israel

• ME/CFS Israel - https://www.mecfsisrael.org/ - mecfs.israel@gmail.com

Italy

• CFS/ME Associazione Italiana - www.stanchezzacronica.it/ - cfs@cro.it

Japan

• Japan ME Association - cfsnon@gmail.com

Lithuania

• Savarankiskas gyvenimas -- EMEA member

Malta

• ME, CFS & FM Alliance Malta - https://www.facebook.com/groups/me.cfs.fmalliance/ - me.cfs.fmalliance@gmail.com

Mexico

• Millions Missing Mexico - [sfcem.mexico@gmail.com - this email doesn't work, does anyone have contact details?]

Netherlands

• ME CVS Nederland -- www.mecvs.nl - info@mecvs.nl -- EMEA member
• ME/CVS Vereniging - https://me-cvsvereniging.nl/ - info@me-cvsvereniging.nl
• ME Centraal - Dutch Me info channel

New Zealand - see also Aotearoa New Zealand regional ME/CFS and Long Covid organisations

• ANZMES - info@anzmes.org.nz - news thread
• Long Covid Support Aotearoa
• M.E. Awareness NZ - m.e.awareness.nz@gmail.com
• ME Support - info@mesupport.org.nz

Norway - see also Norway regional ME/CFS and Long Covid regional organisations

• ME Foreningen (Norwegian ME-association) -- post@me-foreningen.no -- EMEA member
• ME-foreldrene (The ME parents)
• Norsk Covidforening (Norwegian Covid Association)

Portugal

• MYOS -- secretariado@myos.pt

Serbia

• Association of People with CFS SHUKS -- shuts.udruzenje@gmail.com -- EMEA member

Slovenia

• https://www.drustvobolnikovzebra.si/ -- EMEA

Spain

• Associació Catalana d’Afectades i Afectats de Fibromiàlgia i d’altres Síndromes de Sensibilització Central -- https://www.fibromialgia.cat/ - info@sfc.cat
• CONFESQ -- https://confesq.org/?page_id=25415 - EMEA member
• ONG PEM Asociación de Personas con Encefalomielitis Miálgica --info.ongpem@gmail.com

South Africa

• The ME CFS Foundation South Africa - mecfssafoundation@gmail.com

Sweden - see also Sweden regional ME/CFS and Long Covid charities/ organisations

• RME -- info@rme.nu -- forum thread -- EMEA member
• Svenska Covidföreningen (Swedish Covid Association)

Switzerland

• ME CFS Verein Schweiz -- EMEA member

United Kingdom - see also United Kingdom Regional ME/CFS and Long Covid organisations

• 25% M.E. Group -- https://25megroup.org/contact-us/ -- forum news thread
• Action for ME -- questions@actionforme.org.uk -- forum news thread
• Doctors with ME -- https://doctorswith.me/ -- forum news thread
• Hope 4 ME & Fibro Northern Ireland -- hope4mefibro@outlook.com
• Forward M.E. -- https://forward-me.co.uk/contact-us/ -- forum thread
• Invest in ME -- https://www.investinme.org/index.shtml -- info@investinme.org -- EMEA member
• ME Action UK -- https://www.meaction.net/countries/uk/
• ME Association UK - https://meassociation.org.uk/ -- Russell.fleming@meassociation.org.uk
• M.E. Support Northern Ireland -- info@mesupportni.com
• ME Research UK -- https://www.meresearch.org.uk/ -- contact@meresearch.org.uk
• The Grace Charity for M.E. -- info@thegracecharityforme.org
• The Young ME Sufferers Trust (TYMES Trust) -- https://www.tymestrust.org/
• Welsh Association of ME & CFS Support WAMES

• Long Covid SOS -- https://www.longcovidsos.org/
• Long Covid Kids -- https://www.longcovidkids.org/ -- info@longcovidkids.org
• Long Covid Support -- info@longcovid.org

United States - see also United States regional ME/CFS and Long Covid organisations

• The American ME and CFS Society AMMES -- https://ammes.org/
• MEAction USA -- https://www.meaction.net/countries/usa/
• Open Medicine Foundation -- https://www.omf.ngo/
• Solve ME -- https://solvecfs.org/

Please add LocalME as we have been approached by S4ME Committee and are signing Cochrane petition.

We are;
'LocalME'- comprises 52 local support and advocacy groups across the UK as well as outside UK. https://groups.io/g/LocalME

--------------------------------------------------
Just to clarify..

We are not
ME Local Network (MELN) highlighted on AfME website.

 

[Hutan]

Thank you @Suffolkres, great news. I'll add LocalME to both our UK national and regional organisations list, and we'll also add LocalME to the open letter supporter list.

How great that 52 small organisations are so well organised, and that the UK has the 52 organisations.

 

[Suffolkres]

Thank you @Suffolkres, great news. I'll add LocalME to both our UK national and regional organisations list, and we'll also add LocalME to the open letter supporter list.

How great that 52 small organisations are so well organised, and that the UK has the 52 organisations.

Helen B will be sending you our statement on behalf of those on LocalME who have responded for Cochrane letter. Thanks

 

[Hutan]

The name of the South African organisation has been updated on the basis of this

MELCuSA (ME and Long Covid Unite South Africa, formerly the ME CFS Foundation South Africa) and endorsed by the World ME Alliance.

as reported on the /news from South Africa thread.

 

[Ash]

The name of the South African organisation has been updated on the basis of this

as reported on the /news from South Africa thread.

I love it!

 

[Hutan]

• Long Covid Switzerland
• Long Covid Kids Switzerland

Added, thanks to @Yann04

If anyone else is aware of other Long Covid support groups in their country, please note them here or let a moderator know.

 

[Hutan]

I've added Long Covid Greece to the list after seeing them mentioned in association with the WHO Europe Long Covid myth-busting initiative.

 

[Hutan]

I've added Long Covid Europe to the list.

What Are We?​

Long COVID Europe (LCE) is a European network of Long COVID patient associations run by (current and former) Long COVID patients.

Why Do We Exist?​

LCE was founded because many Long COVID patient organizations were struggling with the same issues. LCE creates economies of scale by sharing relevant resources, know-how, and contacts with its members.

 

[Hutan]

From the Long Covid Europe website, I'm adding national member organisations we didn't already have. Added just now:

Long Covid Austria

Long Covid Austria was founded at the end of January 2021. It quickly grew from a Facebook Patient Support Group into a Patient Advocacy Initiative, actively pushing the press to address the issue and increase visibility. We provide information and support to Long Covid patients, we cooperate with health care providers, researchers and politicians and actively try to improve and connect infrastructures to provide recognition, care and support for patients.

Long Covid Belgium

En Belgique, plus de 3% de la population souffre du Covid Long à des degrés divers. L’Association Long Covid Belgium a été créée par et pour les malades souffrant du Covid Long. Nous avons pour objectifs d’informer, de soutenir la recherche, les malades et leurs proches, mais également de collaborer avec les acteurs de santé pour une reconnaissance de la maladie et une meilleure prise en charge.

Long Covid Cyprus
The link is to the Cyprus Federation of Patient Associations website. There is a button to translate the page into English.

Long Covid Cyprus was formed under the Cyprus Federation of Patients’ Associations in April 2022 by patients suffering with long-term COVID19-related symptoms.

Long Covid Cyprus currently has more than 500 members, an active online support and awareness group and a group of collaborating healthcare professionals from different specialties and backgrounds.

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