"About the Patient-Generated Hypotheses Journal Welcome to the Patient-Led Research Collaborative’s first issue of the Patient-Generated Hypotheses Journal. This issue is a compilation of six hypotheses plus poll results. People with Long COVID and associated conditions and caregivers of people with these conditions developed, wrote, chose, and edited this issue. Historically, biomedical research has prioritized hypotheses developed by researchers without lived experience of the conditions they study. People with lived experience who have hypotheses about the mechanisms of their conditions did not have a platform to share their hypotheses, except for within patient communities. Centering patient expertise At the Patient-Led Research Collaborative (PLRC), we have put patients in the driver’s seat of research since April 2020. We centered patients in sourcing hypotheses for Long COVID in the development of our own surveys 1 , in choosing what research to fund 2 , and in setting a new baseline for meaningful patient engagement 3 . We know that patients are the foremost experts on their own bodies. We also know that many patients are immersed in research in areas that the majority of the medical community has yet to explore. The authors of this issue are from diverse professional and academic backgrounds, ranging from self-taught to Ph.D. One of the goals of our Patient-Generated Hypotheses Journal is to highlight the immense talent pool of our patient network, from their backgrounds, their lived experience of being a patient or caregiver, and from their ability to synthesize existing research and align it with their own hypotheses. Additionally, patients and caregivers are often communicating with each other online, 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 the medical community" Patient-generated hypotheses publication panel: Hannah Davis, Dr. Tess Falor, Malka Goldberg, Dr. Rochelle Joslyn, Anna Kern, Jerry Lin, Netia McCray, Lisa McCorkell, DVL Padma Priya, Laila Santana, Mihaela Suleap, Richelle Sepulveda, Hannah Wei. Issue 1, May 2023 in PDF: https://patientresearchcovid19.com/storage/2023/05/Patient-Generated-Hypotheses-Issue-1-May-2023.pdf
Second issue released: https://patientresearchcovid19.com/patient-generated-hypotheses-journal-issue-2-summer-2024/ Topics: Elevated abundance of the Streptococcaceae family within the intestinal microbiome is a consistent and relevant finding for ME/CFS Vijay Iyer Chronic inflammation in Long COVID reduces dopamine levels, and contributes to fatigue and brain fog Liz Moore Carbonic anhydrase activity is increased in myalgic encephalomyelitis/chronic fatigue syndrome Rhyothemis Princeps BCG vaccination as a treatment option for ME/CFS and Long COVID Herbert Renz-Polster
