About IACCI
The IACC Initiative (Infection-Associated Chronic Conditions Initiative) is a newly launched effort under the Long COVID Alliance (LCA), which was formed to address the complex challenges of Long COVID and related conditions through research, advocacy, and education. The Long COVID Alliance brings together a diverse group of organizations and individuals to drive forward progress in understanding, treating, and advocating for those affected by chronic conditions that develop following infections. The LCA was founded by the COVID-19 Longhauler Advocacy Project, Global Pandemic Coalition, and Solve M.E., and joining them on the Long COVID Alliance Executive Committee is Dysautonomia International and the Patient-Led Research Collaborative, as well as individual advocates Liza Fisher and Michael Sieverts. Together with their broad expertise and lived experiences, form the backbone of the alliance's leadership, help guide the IACC Initiative and the forthcoming COVID Prevention & Response Initiative.
Mission
Collaboration.
Unity.
Preparedness.
The IACC Initiative was established to address the urgent and growing issue of infection-associated chronic conditions, which include not only Long COVID but also other conditions such as dysautonomia, ME/CFS, MCAS, PANS/PANDAS, and many others. Despite the diversity of infections that can lead to these conditions, they share common mechanisms and symptoms, making them important to study collectively. This initiative aims to unify research, patient advocacy, clinical care, and policy under one collaborative effort to better understand the root causes of IACCs and to push for effective treatments, cures, and systemic change within healthcare with a focused on ensuring that healthcare systems, researchers, and policymakers recognize the interconnectedness of these conditions and work toward solutions that will benefit the millions of individuals affected. By fostering collaboration across multiple disciplines and patient advocacy groups, we aim to create a future where IACCs are no longer underfunded, misunderstood, neglected, or ill-prepared for during the next inevitable pandemic and wave of IACCs.
Our Collective
Our collective work has already proven the power of collaboration. Together, we’ve engaged with policymakers, supported critical research efforts, and brought much-needed attention to the chronic illness community. The foundation laid by each of these organizations and individuals has enabled the IACC Initiative to take shape and to be positioned for lasting impact. Moving forward, we are committed to continuing this work, expanding research efforts, and ensuring that infection-associated chronic conditions receive the recognition, funding, and comprehensive care they deserve. We are currently seeking to grow our leadership team of the executive committee and initiative co-leads/ chairs. Please contact us if you are interested.
The IACCI is a project of The Long COVID Alliance. The LCA is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
The IACCI is a project of The Long COVID Alliance. The LCA is a network of patient-advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-viral illness.
Our mission at COVID-19 Longhauler Advocacy Project is to advance the understanding of Long COVID and its associated conditions, and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research, and support.
C19LAP is entirely led by a team of people with Long COVID. We work tirelessly to support the Long COVID community by advancing awareness and understanding of Long COVID and its associated conditions as well as helping to shape research, clinical care, and policy ensuring patient and caregiver perspectives and lived experience are centered.
The Global Pandemic Coalition brings together leaders, thinkers, researchers and doers from 6 continents to fight against infectious disease. These Healthcare Systems, Governments, Hospitals, Researchers, Labs, Clinics, Telemedicine, AI, HealthTech companies lead the fight against COVID-19 and infectious disease.
COVID-19 Longhauler Advocacy Project
Our mission at COVID-19 Longhauler Advocacy Project is to advance the understanding of Long COVID and its associated conditions, and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research, and support.
C19LAP is entirely led by a team of people with Long COVID. We work tirelessly to support the Long COVID community by advancing awareness and understanding of Long COVID and its associated conditions as well as helping to shape research, clinical care, and policy ensuring patient and caregiver perspectives and lived experience are centered.
Solve M.E.
The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other infection-associated chronic conditions and illnesses (IACCIs).
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
Patient-Led Research Collaborative
The Patient-Led Research Collaborative is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. We were born out of the Body Politic Slack support group and did the first research on Long COVID in April 2020. We are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.
Our mission is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions.
Dysautonomia International is a 501(c)(3) non-profit organization run entirely by volunteers. We help organize events around the globe each October for Dysautonomia Awareness Month. We hold a large annual conference each summer during which dysautonomia patients, family members and experts from around the world to join together for a weekend of educational programming, fun social events, and grassroots dysautonomia advocacy. We educate medical professionals about autonomic disorders. We fund medical research on POTS and work with researchers to speed up the pace of discovery.
One theme that overlaps with all of our work is the need to involve patients in the process. We believe that patients who live with a chronic illness are great untapped source of knowledge. Throughout the year, we connect patients and families with one and other through email, social media and in-person events. We empower patients to become their own best advocate, and provide a platform for those who want to advocate for others.
The Patient-Led Research Collaborative is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers. We were born out of the Body Politic Slack support group and did the first research on Long COVID in April 2020. We are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.
Our mission is to facilitate patient-led and patient-involved research into Long COVID and associated conditions while following rigorous research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to access care and live with dignity. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions.
IACCI Project Leadership
Our Needs: A Call for Support
To drive the mission of the IACC Initiative forward, we rely on the support and generosity of individuals, organizations, and partners who understand the critical need for action. Addressing infection-associated chronic conditions (IACCs) on a national and global scale requires a well-structured and adequately funded infrastructure. From ensuring fair compensation for leadership to funding impactful research, clinical care advancements, and policy initiatives, your support is vital to making meaningful progress.
Running this initiative requires a comprehensive and sustainable framework. The IACC Initiative aims to compensate its leadership, ensuring that our team of experienced advocates, researchers, and healthcare professionals can continue to dedicate their time and expertise to driving systemic change. Fair compensation for our leadership and team members is essential to building a strong, consistent effort that can tackle the widespread challenges of IACCs. We also seek to hire additional full-time staff to manage key areas such as research coordination, policy engagement, and educational outreach.
01
Funding for Research
At the heart of the IACC Initiative is the need for expanded research funding. Too many infection-associated chronic conditions, including
POTS and other dysautonomias, ME/CFS, and others, have been underfunded and under-researched for decades. We are calling for significant investment in studies that explore the mechanisms, diagnosis, and treatments for IACCs. Funding will be directed toward interdisciplinary research collaborations, ensuring that we can uncover the commonalities between these conditions and develop more effective therapies.
02
Educational Outreach and Clinical Care
Education is another cornerstone of the IACC Initiative. We must work to educate clinicians, healthcare providers, and medical institutions about the complexities of IACCs. To achieve this, we need funding for:
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Grand Rounds at medical schools and hospitals to raise awareness and improve diagnostic and treatment protocols.
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Conferences that bring together researchers, clinicians, and patient advocates to share knowledge and advance clinical care.
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Travel for education and awareness initiatives that enable our team to reach diverse medical communities, advocating for the incorporation of IACC knowledge into everyday clinical practice.
Our goal is to improve the quality of care for IACC patients by ensuring that healthcare professionals are equipped with the most up-to-date research and treatment guidelines. This requires significant resources for developing and distributing educational materials, attending key conferences, and hosting events that advance understanding and action in this space.
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Policy Action
Transforming healthcare for IACC patients requires more than just research and education—it requires policy action. We need funding to engage policymakers at the local, state, and federal levels to advocate for legislation that prioritizes research funding, healthcare coverage, and support services for patients living with IACCs. This includes:
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Hiring policy staff to lead advocacy efforts and build coalitions.
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Organizing lobbying efforts to push for systemic changes in healthcare and funding allocations.
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Supporting travel and outreach efforts that enable our leadership team to meet directly with policymakers, decision-makers, and influencers.
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Infrastructure and Operational Costs
In addition to these core areas, the IACC Initiative needs funding for the basic infrastructure necessary to run a large-scale initiative effectively. This includes:
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Technology and digital infrastructure to support virtual meetings, research data sharing, and patient communication platforms.
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Operational costs such as office space, administrative tools, and day-to-day expenses that keep the organization functioning smoothly.
A Call to Action
Your investment in the IACC Initiative is more than just a donation—it is a direct contribution to advancing research, education, clinical care, and policy for infection-associated chronic conditions. With your support, we can ensure that IACC patients receive the care they deserve, that healthcare providers are educated and equipped to treat these conditions, and that our policymakers prioritize the research and resources necessary to address this growing public health crisis.
We ask you to join us in this vital work. Together, we can create a future where IACCs are no longer overlooked or underfunded, and where patients receive the care, respect, and recognition they need to lead healthier, fuller lives. Your support will allow us to continue the fight and build a brighter future for millions affected by infection-associated chronic conditions.
The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other infection-associated chronic conditions and illnesses (IACCIs).
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
COVID-19 Longhauler Advocacy Project
Karyn Bishof
Karyn Bishof, Founder and President of The COVID-19 Longhauler Advocacy Project, is a first-wave March 2020 Longhauler, mixed-indigenous single mom, and now former firefighter/ paramedic due to Long COVID and its associated conditions. Karyn served on the National Academies of Sciences, Engineering, and Medicines (NASEM) committee tasked with developing the U.S. Government's definition of Long COVID, and serves on the NIH RECOVER Initiatives Ancillary Studies Oversight Committee, and as an external contributor to the AHRQ Long COVID Care Network.
Solve M.E.
Emily Taylor
Emily Taylor is the CEO of Solve M.E. and brings over two decades of unwavering commitment and expertise to her role. Emily has dedicated herself to advancing medical research and patient voices in the realm of ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses. She has been instrumental in driving impactful change, including the publication of pivotal white papers, advocating for increased NIH research funding, and successfully securing $1.25 billion for Long Covid research. She serves as a policy and advocacy advisor, fostering critical partnerships with Members of Congress and federal agencies to amplify the voice of those with ME/CFS, Long Covid, and infection-associated chronic conditions on Capitol Hill. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University.
Patient-Led Research Collaborative
Lisa McCorkell
Lisa McCorkell, MPP is a person living with Long COVID and the co-founder of the Patient-Led Research Collaborative. She is the co-author of several prominent Long COVID research studies, including two reviews in Nature; has worked on legislation including the $11 billion Long COVID Research Moonshot Act; has coordinated a patient-led biomedical research fund of $5 million toward Long COVID and associated conditions; has had dozens of speaking engagements on Long COVID including to Congress, NIH, and the White House; and has co-created scorecards that evaluate meaningful patient engagement in research. She has a masters in public policy from University of California, Berkeley, and a background in social safety net policy and labor and employment issues. She was featured as one of Nature's 10 people who shaped science in 2022.
Patient-Led Research Collaborative
Lúcia Santos
Lúcia is member of the Patient-Led Research Collaborative, and is an advocate and researcher with a BA from Barnard College at Columbia University. A first generation American, she previously worked as a communications and development specialist across multiple business sectors, internationally. She is also a patient representative for ME/CFS and other infection-associated chronic condition (IACC) organizations. Lúcia has co-authored multiple Long COVID research papers, and continues to be involved in local and federal advocacy initiatives aimed at improving outcomes and support for IACC patients.
Patient-Advocate
Liza Fisher
Liza is a national healthcare advocate and RYT-200 yoga teacher committed to providing clinical and patient education around long COVID and associated conditions. In the wellness space, she specializes in a multi-experiential approach of embodiment and repair for individuals having experienced ableism, erasure, and exclusion within the yoga community and beyond. Liza has co-authored numerous research manuscripts, has testified before Congress, and served as a patient representative for NIH and the University of South Carolina COVID Patient Engagement Studio. She also serves on the boards of Long COVID Families and Texas Survivors of Texas. She has a B.A. from Ohio Northern University and an M.B.A. from Northern Kentucky University.
Liza’s eyes were opened to the world of under-acknowledged and under-researched complex ironic illnesses after a months-long hospitalization and being disabled by Long COVID.
Patient-Advocate
Michael Sieverts
Michael’s career in federal science policy spans over 30 years with the National Science Foundation, including as Budget Director and Deputy Office Head in the Office of Budget, Finance, and Award Management. To his work as a patient-advocate, he brings budgeting, planning, and grants management experience, and continues to serve as an NSF Expert. Michael has been a longtime contributor to Body Politic, The Patient-Led Research Collaborative, and Strategies for High Impact, and his story has been highlighted in the Washington Post and on NPR. He has a B.S. in Physics from Guilford College and his M.A. in public policy from UC Berkeley.
After Michael contracted COVID in March 2020 and began experiencing debilitating long-term symptoms, he became one of the first to enroll in NIH’s early post-COVID intramural trials.
COVID-19 Longhauler Advocacy Project
Karyn Bishof
Karyn Bishof, Founder and President of The COVID-19 Longhauler Advocacy Project, is a first-wave March 2020 Longhauler, mixed-indigenous single mom, and now former firefighter/ paramedic due to Long COVID and its associated conditions. Karyn served on the National Academies of Sciences, Engineering, and Medicines (NASEM) committee tasked with developing the U.S. Government's definition of Long COVID, and serves on the NIH RECOVER Initiatives Ancillary Studies Oversight Committee, and as an external contributor to the AHRQ Long COVID Care Network.
Solve M.E.
Emily Taylor
Emily Taylor is the CEO of Solve M.E. and brings over two decades of unwavering commitment and expertise to her role. Emily has dedicated herself to advancing medical research and patient voices in the realm of ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses. She has been instrumental in driving impactful change, including the publication of pivotal white papers, advocating for increased NIH research funding, and successfully securing $1.25 billion for Long Covid research. She serves as a policy and advocacy advisor, fostering critical partnerships with Members of Congress and federal agencies to amplify the voice of those with ME/CFS, Long Covid, and infection-associated chronic conditions on Capitol Hill. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University.
Patient-Led Research Collaborative
Lisa McCorkell
Lisa McCorkell, MPP is a person living with Long COVID and the co-founder of the Patient-Led Research Collaborative. She is the co-author of several prominent Long COVID research studies, including two reviews in Nature; has worked on legislation including the $11 billion Long COVID Research Moonshot Act; has coordinated a patient-led biomedical research fund of $5 million toward Long COVID and associated conditions; has had dozens of speaking engagements on Long COVID including to Congress, NIH, and the White House; and has co-created scorecards that evaluate meaningful patient engagement in research. She has a masters in public policy from University of California, Berkeley, and a background in social safety net policy and labor and employment issues. She was featured as one of Nature's 10 people who shaped science in 2022.
Patient-Led Research Collaborative
Lúcia Santos
Lúcia is member of the Patient-Led Research Collaborative, and is an advocate and researcher with a BA from Barnard College at Columbia University. A first generation American, she previously worked as a communications and development specialist across multiple business sectors, internationally. She is also a patient representative for ME/CFS and other infection-associated chronic condition (IACC) organizations. Lúcia has co-authored multiple Long COVID research papers, and continues to be involved in local and federal advocacy initiatives aimed at improving outcomes and support for IACC patients.