Long COVID Advocates Join Together To Form Alliance To Make Policy Recommendations, Secure Research Funding, And Transform Understanding Of Post-Viral Illnesses

Alliance embraces values of collaboration, strong science, patient-centered engagement and inclusion, and applying multidisciplinary approaches to advance comprehensive solutions

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Solve M.E.

Feb 25, 2021, 10:00 ET

LOS ANGELES, Feb. 25, 2021 /PRNewswire/ -- Today, leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance 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 Long COVID Alliance is a critical collaboration based on the current reality that doctors and researchers are reporting that millions of COVID-19 patients continue to experience chronic and often debilitating post-viral symptoms. This state of extended illness is presently labeled Long COVID," said Oved Amitay, Solve M.E. President and Chief Executive Officer, one of the three Alliance founders. "Even though tests might reveal that no virus remains in the body, COVID-19 'long haulers' continue to struggle, often alone. Our community brings past experiences that are relevant to the current crisis."

In 2020, this same group came together to successfully call for urgent government investments for Long COVID, and $1.15 billion for long-term COVID-19 research at the National Institutes of Health shortly followed. The effort laid the foundation for the new Long COVID Alliance, which will prioritize:

Health equity and confronting systemic bias and racism in the Long COVID response;
Facilitating data harmonization (i.e., combine data from different sources and provide users with a comparable view of data from different studies);
Deploying financial resources from the NIH to create a public-private post-viral research infrastructure and translate research results into treatments and cures for millions;
Providing expert guidance and resources to media and policymakers;
Expanding public-private partnerships;
Leveraging existing post-viral disease knowledge and infrastructure;
Connecting policymakers with patients and scientists; and
Ensuring meaningful patient participation.

"So many patients have bonded together as the healthcare community has not understood why some patients are asymptomatic and others are suffering moderate to debilitating issues a year later," said Hunter Howard, chairman of the Global Pandemic Coalition, a founder of the Alliance. "As one of the first infected in Texas, and a healthcare executive, I immediately noticed doctor friends did not understand my lingering symptoms or the novel coronavirus. We started the Global Pandemic Coalition to bring together private companies to support the public sector pandemic initiatives. If the vaccines continue to drive down mortalities, nothing may be more important now than coming together to drive understanding and fund research for the COVID survivors."

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-Recommendations-Letter-Final-with-signers.pdf

Current Long COVID Alliance partners 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)
Nurse Practitioners in Women's Health (NPWH)
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
YOU + ME Registry (Solve M.E.)

"Many long haulers are now approaching a full year post-infection. We have lost jobs, lost significant quality of life, and lost pieces of who we once were. It's been a long road with an uncertain future and we've finally found hope," said Karyn Bishof, Founder of the COVID-19 Longhauler Advocacy Project and of the Long COVID Alliance. "With the help of our partners, we will ensure that Long haulers are not left out in the cold. The Long COVID Alliance will fight with us for awareness, answers, and ensuring that patient voices are included at every step of solving this 'second wave' Long COVID health crisis."

To learn more, join the Long COVID Alliance, or become a signatory to the NIH letter, visit: www.longcovidalliance .org.

About Solve M.E.
The Solve ME/CFS Initiative (Solve M.E.) is the leading, national non-profit organization solely dedicated to solving ME/CFS. We are committed to making ME/CFS understood, diagnosable, and treatable. Solve M.E. is the largest U.S. provider of private competitive research funding exclusively for ME/CFS working to accelerate the discovery of safe and effective treatments; we strive for an aggressive expansion of funding for research that will lead to a cure, and seek to engage the entire ME/CFS community.

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Contact Emily Taylor
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ALL OTHER INQUIRIES, PLEASE CALL THE SOLVE ME/CFS INITIATIVE AT: 704-364-0016 OR EMAIL [email protected]

SOURCE Solve M.E.