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

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
• Klub pacientů s myalgickou encefalomyelitidou/chronickým únavovým syndromem - https://www.facebook.com/MEcfs.cz me-cfs@seznam.cz

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
• ApresJ20 - Long Covid charity

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
• Associazione CFS Organizzazione di Volontariato

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 -- info@mecvs.nl -- EMEA member
• ME/CVS Vereniging -- info@me-cvsvereniging.nl
• ME Centraal - Dutch ME info channel
• Steungroep ME en Arbeidsongeschiktheid (ME and Disability Support Group)

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
• Dysimmune Research Aotearoa New Zealand - news thread

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

• ME and Long Covid Unite South Africa -- mecfssafoundation@gmail.com --(formerly the ME CFS Foundation South Africa) -- WMEA member

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 (primarily German language)
• Facebook group EM/SFC Suisse (primarily French language) https://www.facebook.com/groups/194371634040745
• Long Covid Switzerland
• Long Covid Kids Switzerland

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
• LocalME- umbrella organisation of 52 local support and advocacy groups across the UK as well as outside UK

• 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/

 

Thanks Solstice, ME/CVS Vereniging added.

 

Posts discussing Tymes Trust have been moved here

 

Added, thanks

 

Finnish Medical ME/CFS Association added, thanks @mango

 

Are we also adding Long Covid groups? Each of the Scandinavian countries have variants of along the lines of "Norwegian Covid Association"

 

I think we could. It's probably better to have a more inclusive list than a less inclusive one.

 

yes, I think so too.

 

I've added the Scandinavian ones to the list

 

ME Advocates Ireland added to the list

 

Thanks @TiredSam - organisations added

 

Thanks @obeat, added