Long Covid and ME/CFS Advocacy
Listed below are a network of Long Covid and ME/CFS charities, advocacy groups and fundraisers by individual advocates.
Community / Patient Advocates
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"With a sense of urgency, we rally for recognition, education, and research, aiming to ensure that every individual with ME/CFS receives the compassionate and effective care, as well as the necessary support they deserve, and ultimately a cure."
"A resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality."
The purpose of Long Covid Advocacy is to highlight systemic injustice in the fields of Long Covid & ME/CFS. Experience of this stems from personal and academic experience. It is clear that we still have light years to go to attain humane care & effective treatment.
ME Foggy Dog is a UK-based Social Enterprise that works for the benefit of the UK and International M.E. Community. As a social enterprise, we give 50% of our surplus to Cure M.E. for biomedical research.
“We are UK-based Long Covid advocacy charity run by volunteers with lived experience. Our mission is to throw a lifeline to people living with the impact of Long Covid by pushing for greater recognition and awareness, driving forward targeted research and providing support and resources"
"Very average (but stubborn) runner of a marathon race in each of the 27 EU member countries to raise awareness and much needed funds for biomedical research into ME & for the charity Invest In ME"
Our charity is made up primarily of people with Long Covid. Our mission is to help anyone with Long Covid and their carers by providing peer support, symptom management resources, engagement with key policy makers, ensuring active patient involvement in research and trials as well as educating the wider public about Long Covid and its effects.
Research
The Open Medicine Foundation is a US-based charity that funds research into the illnesses myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, post-treatment Lyme disease syndrome, and long COVID.
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Foremost among cryptic neuroimmune diseases is one variously known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease. The Center’s mission is to promote research to identify its cause(s), biomarkers, and pathophysiology in order to lead to prevention and effective treatments.
Complex chronic conditions like LongCovid and ME/CFS are not mysterious or hopeless. The opposite is true: we can use new tools to study pathogen activity, environmental exposures, microbiome imbalances, neuroinflammation, gene changes, and other issues in patients with such conditions. PolyBio brings together some of the brightest minds in science to research these topics in a proactive and open-minded fashion.
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Our vision is to bring forward the day when ME/CFS can be cured, through cutting-edge biomedical research.
International initative with a focus on international cooperation and the organisation of transnational awareness campagins. Acts as a link between the different members of the Not Recovered Network.
National, German-speaking initiative that focuses on organising protest actions and awareness campaigns in Germany, Austria and Switzerland.
National initiative based in the Netherlands that focuses on raising awareness through campaigns & protests and that advocates for better education and substantial funding for biomedical research in the Netherlands.