RESEARCH
Dysautonomia International has funded millions of dollars in cutting-edge dysautonomia research since our launch in 2012. In 2020, we began receiving numerous grant applications from researchers seeking to study the relationship between Long COVID and dysautonomia. Our board decided that a dedicated Long COVID Research Fund was needed to support as much of this research as possible. Thanks to donations from the community, we've been able to fund several Long COVID research grants, and provide patient input on study design, data analysis, and publication in numerous other studies. The following is a brief summary of Long COVID related research grants and publications Dysautonomia International has funded, supported or facilitated to date.
Research Grants
Characterization and Intervention Studies in Patients with Dysautonomia and Long COVID
Principal Investigator: Marcus Stahlberg, MD, PhD, Karolinska Institute
The overall purpose of this project is two-fold. First, the researchers aim to describe the biological mechanisms and identify potential novel therapeurtic targets in Long COVID patients with cardiovascular autonomic dysfunction (postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, tachycardia not meeting the POTS or IST criteria) and microvascular endothelial dysfunction. Long COVID patients from clinics around Sweden will be screened using tilt table and other autonomic testing, mast cell activation syndrome biomarkers, lipidomics, proteomics (mass spectrometry), stress-perfusion cardiac MRI, assessment of endothelial function, 6 minute walk test, quality of life and other self-reported screenings from the time of Long COVID diagnosis until four years after diagnosis. The second stage of the study includes randomized placebo controlled, double-blinded clinical trials assessing the efficacy of various interventions, including ivabradine, naltrexone, fulvic acid and enhanced external counter pulsation (EECP).
Autonomic Complications of Post-COVID Syndrome (Long COVID)
Principal Investigator: Mitchell Miglis, MD, Stanford University
This study will assess the incidence of post-COVID autonomic nervous system dysfunction through a large population-based survey using COMPASS-31, a validated survey instrument that can identify autonomic dysfunction. A smaller cohort of Long COVID will be evaluated in person at Stanford's autonomic neurology lab, for autonomic function testing, skin biopsy, salivary analysis and serological testing. People with Long COVID autonomic dysfunction and people with Long COVID who don't have autonomic dysfunction will be enrolled in the in-person part of the study.The goal of the study is to broader our understanding of why some people develop autonomic dysfunction after viral infections and help us understand how autonomic dysfunction contributes to disability in people with Long COVID.
Investigation of the Platelet and Activation of the Innate Immune System in Postural Orthostatic Tachycardia Syndrome and Long COVID
Principal Investigators: William Gunning, MD and Blair Grubb, MD, University of Toledo
The purpose of this project is to test the hypothesis that post-infectious POTS and Long COVID associated orthostatic intolerance/POTS are T-cell mediated autoimmune disorders, similar to rheumatoid arthritis. Prior research indicates that innate immune system cytokines/chemokines are elevated in people with POTS and Long COVID patients; we believe the platelet is integral to activation of the innate immune system. This study will enroll people with post-infectious POTS, people who have recovered from POTS, people with Long COVID who have developed orthostatic intolerance or POTS, and healthy individuals. Various immune markers will be tested, along with a careful medical history and detailed symptom profiling. If the hypotheses proves correct, this will help us identify potential target proteins or immune cells to treat in post-infectious POTS and orthostatic intolerance triggered by COVID-19 or other infections.
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Publications
Characterization of autonomic symptom burden in long COVID: A global survey of 2,314 adults
Chronic autonomic symptom burden in long-COVID: a follow-up cohort study
Preparing for the long-haul: Autonomic complications of COVID-19
Letter to the Editor Regarding: 'Post-COVID-19 chronic symptoms' by Davido et al.
POTS May Be Underestimated in Post-COVID Assessments
Long COVID Characteristics and Experience: A Descriptive Study From the Yale LISTEN Research Cohort
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NIH RECOVER Involvement
In late 2020, the US Congress allocated $1.15 billion to the National Institutes of Health for the RECOVER Initiative (Researching COVID to Enhance Recovery), funding large-scale studies and clinical trials to understand and address the long-term effects of COVID-19, also known as Long COVID. Dysautonomia International board and staff members served on several NIH RECOVER committees, including the Executive, Study Design, Autopsy Protocol, Neuropsychiatric, Autonomic Clinic Trial Protocol, Autonomic Testing and Publications Committees, as well as the National Community Engagement Group. Our board and staff were involved in publication of the following RECOVER manuscripts:
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Measurement of circulating viral antigens post-SARS-CoV-2 infection in a multicohort study
Characterizing Long COVID in Children and Adolescents
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Age-Related Changes in the Clinical Picture of Long COVID
2024 Update of the RECOVER-Adult Long COVID Research Index
Sex differences in long COVID
Response to letter by Zadeh et al. regarding “Chronic autonomic symptom burden in long-COVID: a follow-up cohort study”​
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