Patient-Generated Hypotheses Journal Issue 2
June 26, 2024
Media contact: team@patientledresearch.com
Members of the Patient-Led Research Collaborative (PLRC) have published the second issue of the
Patient-Generated Hypotheses Journal.
The Journal was created in 2023 by PLRC and compiles hypotheses to hasten the discovery of
mechanisms and treatments for Long COVID and infection-associated chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). People with Long COVID and associated conditions and caregivers of people with these conditions develop, write, select, and edit this Journal.
The first issue (May 2023) contained six hypotheses authored by patients and caregivers on topics
including low-dose doxycycline, astrocyte dysregulation, and CD40 ligand as a possible biomarker. The second issue features four hypotheses involving carbonic anhydrase activity, elevations of
Streptococcaceae, chronic inflammation, and BCG vaccination.
The authors of the second issue include Herbert Renz-Polster, a trained pediatrician with ME/CFS; Vijay Iyer, PhD, a former NIH/NINDS principal investigator with ME/CFS; Liz Moore, a queer and genderqueer disabled writer; and Rhyothemis Princeps, an independent patient-researcher.
Vijay Iyer, PhD shares, “Ever since my ME/CFS diagnosis, I’ve felt motivated to at least help connect the dots between published studies in ways that practicing scientists who aren’t personally focused on solving chronic illness might miss or not have any incentive to publish. This publication draws attention to an unintended & unremarked replication lurking in a supplementary figure. I am very glad PLRC has created a venue (this journal) where such interstitial surprises can be published.”
Each article includes an easy-to-read abstract and an in-depth hypothesis with supporting evidence. All highlight unanswered questions and areas for further research, and some provide instructions on how to test the hypotheses.
Lisa McCorkell, a co-founder of PLRC and a co-lead of the Journal, reflects on how this
research could be put into action: “We hope this issue inspires biomedical researchers to use these
hypotheses in their research, to partner with the authors and other patients/caregivers in testing
hypotheses, and to uplift patient-generated hypotheses as credible sources of research generation.”
By providing patient communities a platform and voice in the research process, PLRC anticipates faster discoveries and better outcomes for people with chronic illnesses. Many patients are immersed in research into areas that the majority of the medical community has yet to explore — thousands of international patients in support groups are talking to each other daily, discussing symptoms, experiences, lab results, and the reactions to various medications they are trying.
This pattern recognition is invaluable and regularly results in patients identifying discoveries well before the public and medical community. Examples of these observational discoveries include Long COVID patients being less likely to make antibodies, reinfections being regular occurrences and leading to Long COVID even in people who did not get it the first time, and infections after vaccination from COVID being both common and still leading to Long COVID. Biomedical examples include the identification of overlap between Long COVID and connective tissue disorders like Ehlers-Danlos Syndrome (EDS), the impactsof drugs like anticoagulants on Long COVID symptoms, and the abnormal results from labs like lipid panels and viral reactivations that occur in people with Long COVID.
Herbert Renz-Polster, shares: “I researched this hypothesis from pure desperation. Having lost so much of my former capacity to ME/CFS I not only tried many medications but also worked myself deeply into the topic of how the immune system could be tweaked (so called “trained immunity”) – and thus I came across evidence from other immune related diseases (like multiple sclerosis and type 1 diabetes) that BCG vaccination may be an effective agent to that purpose. I also tried it on myself – and do feel that my baseline has improved since (although this is hard to pin down on the very intervention – as anyone with this fluctuating disease knows).”
For questions, please contact team@patientledresearch.com.
About Patient-Led Research Collaborative: Patient-Led Research Collaborative (PLRC) is a
multi-disciplinary group of people with lived experience of Long COVID, formed together in April 2020 through the Body Politic COVID-19 Support Group, and were the first to conduct research on Long COVID. PLRC’s work thus far has resulted in the identification of key symptoms, timeline, comorbidities, and possible treatment options for Long COVID, as well as a $4.8 million fund for biomedical research with awards decided by patients, a publication of patient-generated hypotheses, and research into the impact of reinfections, identifying Long COVID phenotypes, Long COVID impact in LMIC countries, and others. They have presented their work to the World Health Organization, United States House of Representatives, National Institutes of Health, and Centers for Disease Control and Prevention, and have influenced Long COVID clinical guidelines and legislation. For more on PLRC, visit patientledresearch.com.
About the Authors:
Herbert Renz-Polster was trained as a pediatrician at Maine Medical Center, USA (1995–1999) and
completed a fellowship in pediatric pulmonary medicine at Oregon Health Sciences University. He was staff scientist at the Mannheim Institute for Public Health (MIPH, 2006–2011), then affiliated with MIPH and the Center for Preventive Medicine and Digital Health Baden-Württemberg, Heidelberg University. Notable publications on positional plagiocephaly in infants (together with Freia De Bock) and on neuroglial failure as a possible part of the pathobiological matrix of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (https://www.frontiersin.org/articles/10.3389/fncel.2022.888232/full). He fell ill with ME/CFS in 2017 after an influenza infection.
Liz Moore, aka Sparrow, is a white queer and genderqueer disabled person doing their best to survive late-stage capitalism and an ongoing pandemic. They blog about disability, rare diseases, food intolerances, chronic illness survival strategies, and more on their blog, liminalnest.wordpress.com. They have mostly abandoned Twitter, but you can find them @UntoNuggan.bsky.social.
Vijay Iyer, PhD has over 20 years of experience at the intersection of technology and neuroscience,
including experience as an NIH/NINDS principal investigator. He was diagnosed with ME in 2021 which dates, in retrospect, to an upper respiratory infection in 2014 that ‘mysteriously’ ended his locally competitive road racing (but not before winning his first race in 2012!).
Rhyothemis Princeps* Independent Patient-Researcher. *Author chose to use a pseudonym to protect themselves from possible discrimination at work and school. PLRC verified the author’s identity, and the author is available for communication via their email. PLRC feels it is important to allow for the voices of patients and caregivers to be elevated who would otherwise be silenced due to society’s unfair treatment of people with chronic illnesses.
Past Press Releases
April 2024 | Patient Groups Praise Senator Sanders’ Legislative Proposal for a Long Covid Moonshot
December 2023 | Urgent Call to Address Long COVID Crisis in FY25 Budget: Letter to President Biden