Patient-Led Research Fund

The Patient-Led Research Fund is a $5 million fund which will provide grants to Long COVID biomedical research projects, awarded by a panel of patient-researchers with expertise in post-viral illnesses and lived experience of Long COVID and/or ME/CFS. Biomedical research projects are eligible, including diagnostic devices, test development, and clinical trials.

Request for Proposals

Application Deadline: September 23, 2022 11:59 PM Pacific Time

Award Information:

Patient-Led Research Collaborative is awarding $5 million (USD) in grants. We are planning to fund multiple projects and are accepting proposals between $50k to 1.2 million in cost. These are one-time grants, with projects to be completed ideally within one year, though consideration for up to two years will be granted for projects with larger scopes. Each awarded project will come with two paid (by PLRC) patient-researchers, who will act as consultants on your study for several hours a month. These awards will be distributed in crypto (USD Coin, which is a stable coin tied to the US Dollar) so your organization will need to be able to accept crypto. (If your grant is funded, we can direct you to resources to set this up, and can accept caveats on a case by case basis). 

These grants will be used to support biomedical research studies into Long COVID and associated conditions (e.g. ME/CFS, POTS, EDS/connective tissue disorders, small fiber neuropathy, structural spinal conditions etc.). Eligible studies include those researching diagnostics, biomarkers, pathophysiology, drug repurposing investigations, and treatments/clinical trials (including, but not limited to, drug repurposing, botanicals and supplements, biomedical devices). We encourage and prioritize studies with multiple cohorts and comparator groups of related illnesses (e.g. Long Covid, ME/CFS, hEDS, dysautonomia/POTS etc).

We also especially encourage and prioritize proposals on areas of research identified by patients as critical. In no particular order, these include (but are not limited to):

  • the role of hormones in symptom expression
  • studies on mechanisms driving connective tissue disorders and connective tissue damage in infection-associated diseases, and therapeutics to repair and strengthen connective tissue and structural spinal conditions
  • overlaps with inflammatory conditions like endometriosis
  • how the menstrual cycle impacts the illness, and the impacts of pregnancy on illness
  • antivirals including antivirals against reactivations like EBV
  • addressing and understanding vascular dysfunctions like clotting 
  • addressing and understanding mechanisms of cerebral and general hypoperfusion and hypovolemia
  • mitochondrial treatments and metabolomics research
  • treating and understanding sleep issues, unrefreshing sleep, and circadian rhythm dysfunction
  • addressing brain fog, neurocognitive issues, and neuroinflammation
  • addressing and understanding immune dysfunction and mast cell activation
  • treating autonomic and nervous system dysfunction
  • studying mechanistic overlaps and the relationships between related and comorbid illnesses
  • additional triggers of ME/CFS and connective tissue disease, including mold exposure
  • treating and researching post-exertional malaise (PEM) and fatigue  

The aim of this funding opportunity is to support research with the potential to rapidly advance diagnostics and therapeutics for these conditions, particularly research that is outside of the resources of PLRC and other patient-led and predominantly-online groups. Thus, there are many types of research valued by PLRC, but that are not eligible for this funding opportunity. For example, research proposals may be excluded if they are exclusively survey-based, prevalence studies, qualitative research, studies solely collecting symptoms or experiences, occupational therapy, or behavioral research. Other studies not eligible for funding are studies into therapies that have already been well-evaluated in similar cohorts, do not result in positive outcomes, and are known to cause harm, including studies that use graded exercise therapy and cognitive behavioral therapy. 

We welcome applications from research groups in the Global South. If you would like to submit a proposal in a language other than English, or need assistance with the application process, please contact us at team+questions@patientledresearch.com.

As part of the award for a project, we will allow overhead costs up to 15%.

We will consider projects whose IRB/ethics approval is in progress. IRB/ethics approval must be obtained before dissemination of the funds. 

Each application will be evaluated on the following criteria:

  • Study goal
  • Approach/study design
  • Historically informed/building off existing post-viral and infection-associated research
  • Impact and scalability
  • Diversity, intersectionality, and open science
  • Ethical standards
  • Approach to engaging patient input in study design and consideration of patient burden
  • Involves a research area of patient interest, listed above. Encouraged but not required. 

A webinar was held on September 1st to answer frequently asked questions; the recording can be found here, passcode: 3xJAT=jA. The Q&A page can be found here. For all other questions/assistance, please contact team+questions@patientledresearch.com. If you are unsure if your project is eligible, you are also welcome to email us a brief summary of your study idea in advance.

Application template can be found here: Application Template

This Request For Proposals can also be found as a Google doc here: Request For Proposals

Dates

EventDate
Q&A SessionView the recording here; passcode: 3xJAT=jA
RFP Submission DeadlineSeptember 23rd
Awards AnnouncedEnd of October – early November
Project ExecutionNovember 2022 – 2023

Contact Information

For questions: team+questions@patientledresearch.com
Submit proposal to: team+applications@patientledresearch.com

Panel

We are excited to announce our Patient-Led Research Fund Panel, who will be guiding us through putting together a Request for Proposals and evaluating the submitted proposals for research into Long COVID. This group has a wealth of expertise – both in their skilled backgrounds and their lived experience.

Dr. Athena Akrami is a faculty member at Sainsbury Wellcome Centre, in University College London, where she runs a large neuroscience laboratory studying learning and memory in rodents, human, and computational models. She has more than 15 years of experience in scientific research and publications, project managements, and international collaborations.

Dr. Raven Baxter, Ph.D. is an internationally acclaimed American educator and molecular biologist known for effortlessly merging science with pop culture.

Bea (@Be_Kinderr) is a complex chronic diseases researcher focusing on the overlaps, mechanisms and comorbidities between a core group of neurological and connective tissue diseases including Long COVID, ME/CFS, POTS, hEDS, MCAS and Small Fiber Neuropathy. 

Dr. Steven Bellan, PhD, MPH was a Professor of Epidemiology and Biostatistics at the University of Georgia before developing ME/CFS in 2018, and had also served as a working group lead for WHO, a technical consultant for UNAIDS, and Director of ICI3D. His research focused on the spread and control of infectious diseases, with a particular focus on HIV.

Gina Assaf is a co-founder of the Patient-Led Research Collaborative. She is an independent digital strategist, researcher, and designer for the humanitarian and global aid sector, and the co-founder and managing director of a digital design & development consulting organization. She has worked for organizations such as the United Nations, IRC, World Bank, USAID contractors, Intuit, and GitHub.

Hannah Davis is a co-founder of the Patient-Led Research Collaborative and has a background in data analysis and machine learning, with a focus on generative art & music, and tools for countering bias in machine learning datasets. She has spoken at the Library of Congress, Bell Labs, Eyeo Festival, WHO, NIH, the European Association for Computational Linguistics, and others.

Dr. Megan Fitzgerald holds a PhD in Neuroscience and Neurology, and has expertise in neuroanatomy, cellular biology, and stem cells. She has been struggling with Long COVID since March of 2020.

Dr. Rochelle Joslyn holds a PhD in Immunology from the University of Washington, and has over a decade of experience working as a scientist in human biomedical research. After developing ME/CFS in 2004, she pursued a research career during intermittent remissions in her disease. Rochelle is currently caring for her young children full time, but she participates broadly in the ME/CFS scientific and advocacy communities.

Dr. Asad Khan is a pulmonologist in Manchester, United Kingdom who has been unable to work since Nov 2020 since contracting COVID19 at work due to inadequate protection. He suffers with Long Covid & a number of complications including ME and PoTS. He is active in the advocacy space and also a collaborator of #TeamClots which includes Prof Resia Pretorius & Prof Doug Kell.

Beth Mazur is the co-founder of #MEAction, a grassroots non-profit advocating for people with Myalgic Encephalomyelitis. She has a BS in Electrical Engineering and Computer Science from MIT.

Dr. Dona Kim Murphey, MD PhD is a systems neuroscientist and neurologist, community organizer, historian of science, and COVID long hauler. In addition to her scientific and clinical interest in the etiology of and (dietary, behavioral, pharmaceutical) interventions for the neurological manifestations of COVID, she is a strong advocate for health equity in biomedical research. 

Dr. Shaun Peter Qureshi is a physician with a clinical background in general internal medicine and palliative medicine, and an academic background in medical education and systems research.  Shaun is living with Long Covid, and is an advocate for healthcare workers with occupational illness and for patients with chronic post-viral illness.

Dir. Jaime Seltzer, MS is the Director of Scientific and Medical Outreach at #MEAction. She is responsible for fostering communication between research scientists, clinicians, and people with ME/CFS. She works with Stanford, Columbia, Mayo Clinic, and Project ECHO on post-infectious chronic complex diseases, including ME/CFS and Long COVID, and is running a survey-based study and small proteomics mass spectrometry project on these diseases.

Dr. Letícia Soares (MSc PhD) is a Brazilian scientist, first wave long hauler, and person with ME/CFS. Her academic training and background are diverse, with research experience focused on ecology and evolution of infectious diseases.

Becky Taurog

Dr. Becky Taurog did her Ph.D. in biochemistry (UM-Ann Arbor) studying enzyme mechanisms and postdoctoral research (TSRI) on virus structure.  She was early in her career as an assistant professor of chemistry when she gradually became ill with ME, starting ca. late 2014.  She is still unable to work or do many daily activities due to ME.

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