Body Politic COVID-19 Support Group Joins ‘Long COVID Alliance’
The Long COVID Alliance Includes a Network of More Than 50 Patient-advocates, Scientists, Disease and Public Health Experts, and Drug Developers
Launched by Solve ME/CFS Initiative, the Alliance Includes The National Organization For Women (NOW), The National Health Council, and Other Leading Health Groups
NEW YORK -- In an effort to make policy recommendations, secure research funding, and transform understandings of post-viral illnesses, Body Politic COVID-19 Support Group announced it is partnering with the Long COVID Alliance.
The Long COVID Alliance, launched by Solve ME/CFS Initiative, includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by ‘COVID long haulers’ and related post-viral illnesses.
Their goal is to transform the current understanding of Long COVID and related post-infectious illnesses such as: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses.
The Body Politic COVID-19 Support Group is one of the largest COVID-19 support groups in the world, as it serves more than 10,000 patients, hailing from nearly every continent of the world. Body Politic’s COVID-19 Support Group and COVID community resources were created to connect people living with COVID-19, provide resources to caregivers and patients, advocate for policy-change, and make current conversations about the pandemic more inclusive of those battling the virus.
Created in 2018 by journalist and health justice advocate Fiona Lowenstein, Body Politic is a grassroots patient-led health and wellness advocacy organization. In 2020, after testing positive for COVID-19, Lowenstein and collaborator Sabrina Bleich co-founded Body Politic’s COVID-19 Support Group.
“The Long COVID Alliance offers an important opportunity for the emerging COVID patient advocacy movement to work alongside stakeholders with expertise in public health, health justice, and other chronic illnesses and disabilities,” said Body Politic founder, Fiona Lowenstein. ”Long COVID patients cannot do this work alone, and collaboration is necessary to shift the healthcare paradigm not just for Long COVID, but for all post-infectious illnesses.”
Current partners in the Long COVID Alliance include: Action for M.E., American Medical Women’s Association (AMWA), Bateman Horne Center, Body Politic, Covid-19 Longhauler Advocacy Project, Dysautonomia International, ENIGMA COVID-19 Working Group, Florida Society of Neurology, HADASSAH, Health Rising, Healthy Women, Institute for Neuro-Immune Medicine (INIM), Kantor Neurology, LLC, Long COVID Physio, Massachusetts ME/CFS & FM, #MEACTION, ME International, Medical Partnership 4 MS+, Minnesota ME/CFS Alliance, National Association for Nurse Practitioners in Women’s Health, National Health Council, National Organization for Women (NOW), Open Medicine Foundation, PandoraORG, PolyBio Research Foundation, Pulmonary Wellness Foundation, Sex and Gender Health Collaboration, Simmaron Research, Solve M.E., The American Dysautonomia Institute (ADI), The Mast Cell Disease Society, Inc., The SHANE Foundation, Utah COVID-19 Long Hauler, Whittemore Peterson Institute, and YOU + ME Registry (Solve M.E.).
To accompany the Long COVID Alliance's launch, the initial partners from 2020 have drafted key recommendations and guidance for the National Institutes of Health (NIH), which can be found by visiting: https://longcovidalliance.org/wp-content/uploads/2021/02/NIH-Long-COVID-Alliance-NIH-RecommendationsLetter-Final-with-signers.pdf.
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ABOUT BODY POLITIC
Through a global network of COVID-19 patients, chronic illness allies, and health and disability advocates, Body Politic breaks down barriers to patient-driven whole-person care and well-being, particularly for historically marginalized communities by facilitating peer-support, cultivating patient-led research and public education, and leading community-based advocacy.
