Frequently Asked Questions
-Who is PLRC?
-How has the PLRC funded its work to date?
-How did PLRC choose the five projects from the new funding?
-I want to help. How can I contribute financially to further PLRC research?
-When will the biomedical research funding pool be set up and how soon will the funds be distributed?
-What will be the process of deciding what gets funded?
-How do / can people join PLRC?
-Will the funding institution be affecting the research priorities of PLRC? How will it be guaranteed that Long Covid patient’s best interests will keep guiding PLRC?
Who is PLRC?
The Patient-Led Research Collaborative is a group of Long Covid patients who are also researchers. We were born out of the Body Politic support group and did the first research on Long Covid in April 2020.
Our mission is to facilitate patient-led and patient-involved research into Long Covid and associated conditions while also following rigorous and sound research methodology, and to advocate for policies that enable patients, particularly the most marginalized, to survive and thrive. 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. Our work includes patient-only projects, collaborations between PLRC and outside organizations, and consulting as patient researchers for outside organizations.
We have put out three papers (below) and many others with external collaborators from N3C, Yale, University of Toronto, Imperial College London, University College London, and others. We regularly meet with the CDC, WHO, NIH and other official medical associations and governments to inform their ongoing Long COVID responses and guidelines. We regularly consult for other researchers doing work on Long COVID and we are currently working with CMSS on a grant from PCORI to create a patient-led model for patient involvement in research.
May 2020: Report: What Does COVID-19 Recovery Actually Look Like? An analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team
November 2020: Patient-Led Research Collaborative: embedding patients in the Long COVID narrative
December 2020: “Characterizing Long COVID in an International Cohort: 7 months of symptoms and their impact” (published in The Lancet’s EClinicalMedicine journal in July 2021: https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext).
How has the PLRC funded its work to date?
Since our inception in April 2020, our work to date has been a combination of unfunded volunteer-based research initiated from our team members and collaborations with research institutions. We have received a total amount of about $100,000 in project-specific funding as collaborators with Scripps Research Institute, Yale, and others for consulting on Long COVID research studies, and from PCORI (with CMSS) to developing a patient-centered research playbook for patient groups, research partners, and funders that establishes a new baseline of acceptable patient engagement in research. Beginning in May 2022, we will also receive $128k from National COVID Cohort Collaborative (N3C) for analysis and integration of patient-reported data, as well as advising on research hypotheses and study methods. We have also received some generous individual donations adding up to $12,000.
These funds have gone toward stipends for our contributors over the last two years and overhead costs (software, website), but have not been enough for consistent payment for PLRC members.
We are very excited to begin paying patient-researchers for their hard work. We will also continue to be open to volunteers for those who do not need funds.
We are very excited to begin paying patient-researchers for their hard work. We will also continue to be open to volunteers for those who do not need funds.
How did PLRC choose the five projects from the new funding?
PLRC, in alignment with Balvi, chose the initial projects based on what we believe are the most important questions to answer, which projects would help give us the knowledge we need to end the pandemic (a goal that is shared with Balvi), and where we feel we can make the most impact as a patient-led team. Reinfections are one of the biggest questions of the pandemic; if reinfections worsen patients’ health status, that requires drastic policy change. Phenotyping Long Covid is particularly important as clinical trials and treatments begin to be tested; what may work for someone with a particularly respiratory form of Long Covid may look different for those who have a neuro-Long Covid or ME/CFS from Covid. Looking at quality of life in a low-middle income country is important to flesh out the experience of Long Covid in countries where awareness and access to resources impact disease burden. As long COVID is a global pandemic, it is important to highlight experiences that will be missed by centering high-income countries in research. Collecting and distributing patient-generated hypotheses, many of which are obvious to patient-researchers but rarely known to researchers who are new to Long Covid and post-viral illness, is important to both speed up research and also create more precise research questions that reflect what patients have researched and prioritize as time-sensitive. Finally, for our fifth project we chose to set up a biomedical research fund because we realize that some of the answers require infrastructure and resources that are beyond PLRC’s capacity on its own.
I want to help. How can I contribute financially to further PLRC research?
Tax-deductible donations can be made through our fiscal sponsor here:
https://www.paypal.com/donate/?hosted_button_id=B7XUWW9JT7Q54.
We also have a GoFundMe running here: https://www.gofundme.com/f/patientled-research-for-long-covid. Funds will be used to support operational costs of running PLRC and supporting other research projects that are currently unfunded.
We also would not exist without our community. Please consider contributing to one our partner organizations in the Strategy Circle of Long COVID Justice:
Body Politic: https://www.gofundme.com/f/fuav69-body-politic-covid19-support-group
National Network for Long COVID Justice: tinyurl.com/LCJdonate
Covid-19 Longhaulers Advocacy Project: https://www.gofundme.com/f/covid19-longhauler-advocacy-project
#MEAction: https://act.meaction.net/page/13161/donate/1
Marked By COVID: https://secure.actblue.com/donate/mbc_website
When will the biomedical research funding pool be set up and how soon will the funds be distributed?
The biomedical fund will be the first project to be set up and will be set up ASAP. Our goal is to put out a call for proposals by early summer 2022, decide on which proposals will be funded by mid-late summer 2022, and have all funds distributed by the end of 2022. Stay up to date by visiting our page dedicated to making our progress with the fund transparent: http://patientledresearch.com/transparency
What will be the process of deciding what gets funded?
A panel of patient-researchers, including people with Long Covid and associated conditions (ME/CFS, dysautonomia, MCAS, EDS), will be assembled. All patient-researchers will have extensive knowledge of existing research and a good understanding of research questions that have yet to be answered.
PLRC and the panel will release a request for proposals that will detail the proposed research question, patient engagement protocols, and study design. Research studies that will be eligible for the funds will include biomedical research (i.e. tissue studies), diagnostic devices (e.g. identifying blood clots), clinical trials (e.g. anticoagulants, Paxlovid, BC007, pycnogenol, statins), and prevalence studies. The panel will create the criteria for how to evaluate each study, which will likely include, but is not limited to: 1) the potential impact of the study, 2) its scientific merit based on previous Long COVID and post-viral illness research, 3) its relevance to patients across the world, and 4) how quickly results can be published and disseminated to a worldwide audience. When needed, the patient experts will set up meetings with the researchers for further inquiries. . Once chosen, each grantee will be given funding for patient engagement and at least two patients will be involved with each project. Finally, funded studies will be required to share any significant progress and their final findings with the Long COVID patient community in accessible ways.
There will be two tiers of grants: a $200,000 tier and a $500,000 tier, both of which include funding for patient engagement. Amounts granted to chosen research studies will depend on cost of study and potential impact. If studies require additional funding than the awards are for, and fewer than 6 studies are identified, funds will be redistributed amongst the studies.
How do / can people join PLRC?
PLRC is open to Long Covid and ME/CFS patients who are interested in research and have skills that assist in research analysis, operations, communication, advocacy, and more. We do not require advanced degrees to join PLRC. We believe lived experience of these illnesses is valuable in itself, and that the combination of lived experience and multidisciplinary skillsets strengthens research.
Please fill in the volunteer form here if you are interested in joining PLRC! We do onboardings every few months. Available roles for the Balvi projects will first be pulled from existing members of PLRC.
We work through the Body Politic Support Group Slack, which is open to Covid patients and their caregivers and can be joined here.
Will the funding institution be affecting the research priorities of PLRC? How will it be guaranteed that Long Covid patient’s best interests will keep guiding PLRC?
Maintaining a patient-led culture on our team and in our work has been our priority since the beginning and our funders support us because of that. To achieve mutual goals of high-impact projects that will lead to answers that could end the pandemic, Balvi gave us flexibility to set specific research priorities with their input as advisors. Our project teams will always be led by patients, and the biomedical projects we will grant money to are decided by patients as well, with final sign-off from Balvi to ensure they align with their values and objectives.
If you have another question for PLRC, feel free to submit your question here! PLRC Question Form