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

Hutan said:
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
Australia - see also Australian regional ME/CFS and Long Covid charities/ organisations
Austria
Belgium

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

Croatia

Czech Republic

Denmark

Finland

France

Germany
Iceland

Ireland

Israel

Italy

Japan

Lithuania
  • Savarankiskas gyvenimas -- EMEA member


Malta

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

Netherlands

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

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

Portugal
Serbia

Slovenia

Spain

South Africa

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

Switzerland
  • ME CFS Verein Schweiz -- EMEA member

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

 
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Hutan said:
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.
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Helen B will be sending you our statement on behalf of those on LocalME who have responded for Cochrane letter. Thanks
 
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.
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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.
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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.
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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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Facebook
 
Long Covid Deutschland

Highlights​

1. Participation in public hearings of the Committee on Health in the German Parliament on issues pertaining to Long COVID on 7 and 24 June 2021.

2. Advisory role during sessions of the inter-ministerial working group on Long COVID hosted by the Federal Ministry of Health in June and August 2021.

3. More than 50.000 signatories to petition calling on the federal government to ramp up financial support for awareness, clinical care, and research into disease mechanisms.

4. Collaboration on the first targeted Long COVID guideline for patients and carers.
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Long Covid Nederlands

1) The 6th of July we handed over our petition, signed by more than 12.000 people, to members of the Dutch House of representatives, which led to motions by multiple politicians and a response from the Minister of Public Health, Welfare and Sports, including €7,8 million in extra funding for Long Covid research.

Brief aan de Tweede Kamer – Long Covid Nederland (wordpress.com)

Uitgebreide toelichting – Long Covid Nederland (wordpress.com)

Blog – Long Covid Nederland (wordpress.com)

2) We started a patient support group on Facebook with more than 2.500 members and provide information about Long Covid through various (social) media channels.

Long COVID Nederland (PASC) – langdurige corona klachten | Facebook

(8) Petitie Long C o v i d Nederland PASC | Facebook

(3) Petitie Long COVID Nederland (PASC): Company Page Admin | LinkedIn

Long COVID Nederland (PASC) (@longcovidnederland) • Instagram photos and videos

Long COVID Netherlands (PASC) (@LongCovidNL) / Twitter

3) We are advising and providing patient perspectives on Long COVID research studies and contributing to WHO EU on the topic of Long Covid education.
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Long Covid Sweden

Highlights​

In early 2020 we were hit by the first wave. Very many were infected by the virus, but what no one knew then, was that very many of us would not fully recover.

When the state of knowledge was at its lowest, several groups opened up on Facebook. Groups where many sought help from each other when the the health service ”closed the door” on us because we could still breathe.

It was in the groups that all non-profit work started to push for the right to examinations, symptom treatment, rehabilitation and recognition.

The virus has caused a variety of symptoms that affect different parts of the body. These long-lasting and persistent symptoms affect the quality of life, ability to work and attendance at school.

We need help and we needed it yesterday!



  1. Royal Academy of Sciences Sub-report 2021-04-27: Post-acute Covid-19 syndrome – long-term complications of Covid-19
”Given the knowledge gap that exists around prolonged symptoms after Covid-19 infection is required a lot of research in a very large number of areas. In the short term, we need a better way

be able to estimate the size of the problem in society. Questions to shed light on immediately are: How come some individuals develop prolonged symptoms? What processes are involved

in curing SARS-CoV-2 infections? What are the disease mechanisms of these symptoms? How do the current symptoms affect the sufferer from a broad perspective?”

https://s3.eu-de.cloud-object-stora...ge-pdf/2021/04/covidrapport3_210426_FINAL.pdf

  1. SBU – Statens beredning för medicinsk och social utvärdering
The goal of the project was to prioritize the ten most important research issues regarding long-term symptoms of covid-19. The participants came from User Associations, Facebook groups Research nodes Authorities and Professional Associations

https://www.sbu.se/sv/publikationer...nde-langvariga-symtom-vid-covid-19-postcovid/

  1. Socialstyrelsen
Postcovid – support for staff and decision-makers in health https://www.socialstyrelsen.se/glob...okument/artikelkatalog/ovrigt/2021-3-7276.pdf



Children

  1. Jonas F Ludvigsson professor vid Institutionen för medicinsk epidemiologi och biostatistik provides an overview of the scientific literature on long covid in children.


  1. Barnombudsmannens rapport –
Consequences of the Covid-19 pandemic for children Final report of government assignments, 2021-06-30, Dnr 2020-0218

https://www.barnombudsmannen.se/globalassets/dokument-for-nedladdning/publikationer/publikationer2/barnombudsmannens-rapport—covid-19-pandemins-konsekvenser-for-barn-slutredovisning-av-regeringsuppdrag_.pdf
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