Long COVID Sweden
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!
- 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?”
- 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
Postcovid – support for staff and decision-makers in health https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/ovrigt/2021-3-7276.pdf
- Jonas F Ludvigsson professor vid Institutionen för medicinsk epidemiologi och biostatistik provides an overview of the scientific literature on long covid in children.
- Barnombudsmannens rapport –
Consequences of the Covid-19 pandemic for children Final report of government assignments, 2021-06-30, Dnr 2020-0218
Other members of Long COVID Europe
Long COVID NetherlandsWebsitehttps://longcovidnederland.wordpress.com/ Patient Support group Long COVID Nederland (PASC) - langdurige corona klachten | Facebook 1) The 6th of July we handed over our petition, signed by more than 12.000 people, to members of the Dutch...
Long COVID AustriaLong 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...
Long COVID Belgium (Wallonia) Covid long, nous existons Belgique In the Wallonia part of Belgium, the patient association ‘Covid long, nous existons Belgique’, together with the Flemisch counterpart, fights for the rights of the long-term Covid sufferers in...
Long COVID FranceWebsiteapresj20.fr Support groupfacebook.com/ApresJ20 Twittertwitter.com/apresj20 Contactassociation@apresj20.frHighlights Since April 2020, thanks to the hashtag #ApresJ20, patients have gathered in France on social networks, especially on Twitter....
Long COVID UKLong COVID Support Long Covid Support was formed by a group of people struggling to recover from Covid-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and...
Long COVID GreeceLong COVID Greece Long Covid Greece is a newly founded initiative working towards formation of an organisation and website. It started initially as a Facebook group in March 2021, offering support and information in people and doctors affected by long...
Long COVID Belgium (Flanders)post-COVID gemeenschap In the Flemish part of Belgium, the Flemish patient association ‘post-COVID gemeenschap’, together with the Walloon counterpart, fights for the rights of the long-term Covid sufferers in Belgium.Websitepost-covid.be...
Long COVID GermanyWebsitelongcoviddeutschland.org Support groupLong COVID Deutschland Selbsthilfegruppe Twittertwitter.com/longdeutschland Contactinfo@longcoviddeutschland.orgHighlights 1. Participation in public hearings of the Committee on Health in the German...
Long COVID SwitzerlandLong COVID Schweiz Long Covid Switzerland is an association officially founded in March 2021 and based in Bern. It has its roots in a Facebook group, started in September 2020, which provides information and support to people affected by Long...