Patient-Led Research Collaborative @patientled.bsky.social · 3h"So, in sharp contrast to the widespread conception of sick people as medically ignorant and unscientific, they as a group have knowledge of the aetiology, pathophysiology, and treatment options for their illness... that is the product of a complex scientific process" 151
Patient-Led Research Collaborative @patientled.bsky.social · 3h"They design research tools, such as questionnaires to evaluate disease severity. They are constantly in dialogue with institutional researchers, informing their understanding of the disease, sharing their collective experience of the illness" 141
Patient-Led Research Collaborative @patientled.bsky.social · 3h"Lay scientists... also produce their own (research)... called patient-led... They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, & conceptual-definitional groundwork, which they publish in scientific journals" 141
Patient-Led Research Collaborative @patientled.bsky.social · 3h"Thankfully, this does not apply to all doctors: a number of them have become ME specialists... one of the striking and more unique features of these doctors’ medical practice is their collaboration with their patients." 161
Patient-Led Research Collaborative @patientled.bsky.social · 3h"It is interesting to remark that this ignorance about ME is not just systemically produced, but also systemically maintained. Indeed, the mechanism by which doctors come to be ignorant of ME also renders them impermeable to accurate information" 171
Patient-Led Research Collaborative @patientled.bsky.social · 3h"in a recent study among hospital doctors, 89% of respondents admitted not knowing how to diagnose ME, and 75% were unaware that ME can be fatal" 171
Patient-Led Research Collaborative @patientled.bsky.social · 3h"In a recent study among medical students, 78% declared that they had not been examined on ME at medical school, 22% were “not sure” and 0% answered that they had. As a result, doctors are severely ignorant about even basic facts" 181
Patient-Led Research Collaborative @patientled.bsky.social · 3h"it would be a mistake to conclude that ME is mysterious... despite its underfunding, biomedical research on ME has established it to be a biological disease with immunological, metabolic, neurological, and cardiovascular aspects." 171
Patient-Led Research Collaborative @patientled.bsky.social · 3h"because of its controversialisation, state funding on ME has been grossly insufficient. For instance, a recent analysis found that NIH funding for ME would have to increase 40-fold to be commensurate with average NIH funding relative to disease burden" 161
Patient-Led Research Collaborative @patientled.bsky.social · 3h"Comparing the controversialisation of ME to... HIV/AIDS allows us to better understand controversialisation as a general phenomenon. A correct but fragile scientific consensus exists about a disease. This consensus comes to be disputed, in ways... related to bigoted ideas" 161
Patient-Led Research Collaborative @patientled.bsky.social · 3h"IACCs are characterised by a breakdown of the usual asymmetry about the medical aspects of illness: doctors, but not their patients, are ignorant about aetiology, prognosis, and treatments." 161
Patient-Led Research Collaborative @patientled.bsky.social · 3hIncredible new paper from PLRC member @chloedecanson.bsky.social: "I present a case study, that of myalgic encephalomyelitis... the medical aspects of the illness are on the whole better understood by sick people than by their doctors." 2228
Reposted by Patient-Led Research CollaborativeKristin Meekes @kmeekes.bsky.social · 05/10/2026Really important thread and paper ⬇️ #MedSky 1257
Reposted by Patient-Led Research CollaborativeLong Covid Advocacy @longcovidadvoc.com · 06/10/2026Extraordinary article about ME - its history, controversialisation & how medical ignorance is systemically maintained. Clear & thorough 💫 Brilliant 🧵by Chloe 👇 25514
Reposted by Patient-Led Research Collaborativeemily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 09/10/2026Required reading for doctors, journalists, & anyone who cares about anyone w/ ME or Long Covid ⬇️ Includes excellent history of #GreatestMEdicalScandal & how the ignorance of doctors re #MECFS is continually renewed through informal (mis)training + biased media www.sciencedirect.com/science/arti...sciencedirect.com 26828
Reposted by Patient-Led Research CollaborativePatient-Led Research Collaborative @patientled.bsky.social · 07/10/2026PLRC co-founder @ahandvanish.bsky.social spoke to @thesicktimes.org about the importance of illness duration in validating #LongCovid biomarkers: “If your study has patients that are all over the place in terms of illness duration, that’s going to complicate the findings”thesicktimes.orgVIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick TimesLed by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials. 1146
Patient-Led Research Collaborative @patientled.bsky.social · 07/10/2026“It is possible that, on a 5-year horizon, you would be able to give a blood sample & we could say, ‘Yes, based on these 3 markers, we can confirm that you have #LongCovid & it is the autoimmune phenotype, for example, & these are the treatments we’re going to give you,’” — @putrinolab.bsky.socialthesicktimes.orgVIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick TimesLed by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials. 2111
Patient-Led Research Collaborative @patientled.bsky.social · 07/10/2026"We recognized the very fragmented and ad hoc way that these efforts were coming together," said @michaelpelusomd.bsky.social. “And we really wanted to provide a central organized structure within which that work could take place.” #LongCovidthesicktimes.orgVIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick TimesLed by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials. 161
Patient-Led Research Collaborative @patientled.bsky.social · 07/10/2026"Another problematic factor is that #LongCovid is a fluctuating condition. Biomarkers that appear to be prominent early on might play no role at later stages, said @ahandvanish.bsky.social, co-founder of the Patient-Led Research Collaborative (PLRC)."thesicktimes.orgVIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick TimesLed by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials. 152
Patient-Led Research Collaborative @patientled.bsky.social · 07/10/2026PLRC co-founder @ahandvanish.bsky.social spoke to @thesicktimes.org about the importance of illness duration in validating #LongCovid biomarkers: “If your study has patients that are all over the place in terms of illness duration, that’s going to complicate the findings”thesicktimes.orgVIPER aims to fast track Long COVID biomarkers. Here’s how it works. - The Sick TimesLed by researchers at UCSF, the research program plans to validate promising candidates for noninvasive tests that can be used to advance clinical trials. 1146
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026You can read the paper (open access) here: www.sciencedirect.com/science/arti...sciencedirect.com 1268
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026But most of all, it is indebted to the ME community for everything it has done for me since I suddenly became bedbound with ME as a result of a COVID infection in 2022, including for directing me to the treatment that improved my health enough I was able to write this paper (from bed). 2374
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026The paper is indebted to the great books that have been published about ignorance in science and medicine, from the classics Impure Science by Steven Epstein and Agnotology by Robert Proctor and Londa Schiebinger, to the recent banger Pilules Roses by @ferrydanini.bsky.social 1212
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026It contains a clean version of this picture of a protest organised by #MECFSkinder in Berlin last year, in front of the Federal Ministry of Research. You can find out more about them here: www.mein-kind-kann-nicht-mehr.de (in German) 1173
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026The paper also quotes from @anilvanderzee.bsky.social's exceptional documentary, "Doctors as Patients", where doctors with IACCs recount what they were taught about this class of diseases before they became sick with them, and what their lives have been like since. www.youtube.com/watch?v=J0yw...youtube.comDoctors as Patients (with subtitles)YouTube video by Anil about ME 1298
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026The second is the perhaps even more stigmatised fact of vaccine injuries. Vaccines are very safe and have played an essential role in massively reducing acute deaths from COVID, but in rare cases, they can trigger or worsen ME. Our community includes several pro-vax but vax-injured people. 1292
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026I am also proud to have included discussions of two especially controversialised aspects of ME, an already controversialised disease. The first is the impact of mould on disease, which is thoroughly stigmatised, especially in left-wing and liberal circles: 1262
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026Collectives of lay scientists like @renegaderesearch.bsky.social and @patientled.bsky.social are discussed. Several institutional researchers are mentioned but @sunsopeningband.bsky.social and the @openmedf.bsky.social get a special mention for their work in collaboration with sick people. 1232
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026As well as @longcovidpharmd.bsky.social, @betsyladyzhets.bsky.social and @mileswgriffis.bsky.social from @thesicktimes.org, and @tessfalor.bsky.social from @renegaderesearch.bsky.social. 1251
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026I am very proud to have interviewed and featured the words of amazing people w ME (or belonging to the IACC community), incl. @lauravictorine.bsky.social, @kylofone.bsky.social, @mecfsscience.org, @tomkindlon.bsky.social, @naomidharvey.bsky.social, @fvrhijn.bsky.social, @chromatowski.bsky.social 3/ 1233
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026In this paper, I cover what I call the 'controversialisation' of ME, the 'undone science' around it, the resulting production of ignorance or 'agnotology' among doctors, and the reactive lay production and distribution of knowledge among sick people. 1283
Reposted by Patient-Led Research CollaborativeChloé de Canson @chloedecanson.bsky.social · 05/10/2026Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack. 1119281
Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026"In addition, teachers’ unions should advocate for more teachers living with #LongCovid to receive all necessary accommodations and supports to continue to serve as educators, including being able to teach part-time." journals.sagepub.com/doi/10.1177/...journals.sagepub.comSage Journals: Discover world-class researchSubscription and open access journals from Sage, the world's leading independent academic publisher. 0112
Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026"We encourage schools to invest in interventions that will have public health benefits with minimal educational consequences. We particularly highlight air purification and ventilation as highly effective in reducing risk of infection."journals.sagepub.comSage Journals: Discover world-class researchSubscription and open access journals from Sage, the world's leading independent academic publisher. 1143
Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026"Teachers are over-represented among people living with #LongCovid... In a nationwide USA sample from 2022, 9.5% of currently employed elementary and secondary teachers reported having Long COVID."journals.sagepub.comSage Journals: Discover world-class researchSubscription and open access journals from Sage, the world's leading independent academic publisher. 1134
Patient-Led Research Collaborative @patientled.bsky.social · 01/10/2026A new publication is out from PLRC member Dr. Alison Cohen of UCSF! "We encourage state legislatures to pass legislation that requires all schools to make changes to their infrastructure to support cleaner air to protect students & teachers." #LongCovidjournals.sagepub.comSage Journals: Discover world-class researchSubscription and open access journals from Sage, the world's leading independent academic publisher. 1228
Reposted by Patient-Led Research CollaborativeShannon Knight @shannonknight.bsky.social · 17/09/2026Positive results from a trial! 0137
Reposted by Patient-Led Research Collaborativebabs ✨ @itsbabs.bsky.social · 17/09/2026“It’s possible, even likely, that one or more of the other explanations for longCovid’s pathology is … viral persistence leading to immune dysfunction, for example, which then prompts inflammation or interferes with mitochondria & causes cellular damage.” it’s hubris to think it won’t happen to you 18635
Reposted by Patient-Led Research CollaborativePatient-Led Research Collaborative @patientled.bsky.social · 15/09/2026This is a great example of what happens when trialists like @biovie.bsky.social listen to patients. Based on feedback from patient-researchers at PLRC & other orgs, the trial changed eligibility criteria for illness duration from a 2 year cap to include patients sick for longer. 2/ 1172
Reposted by Patient-Led Research CollaborativePatient-Led Research Collaborative @patientled.bsky.social · 15/09/2026This is an incredibly exciting development for the #LongCovid field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! 7/ bsky.app/profile/biov... 0277
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026“Having the capability to help the community, I feel a moral obligation to use my skills for that purpose, because I feel like there’s reason for hope. And I want other people to know that—to feel that hope.” — @julialmv.bsky.socialsmithsonianmag.comFor Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them ReliefLong Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers 0158
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026"Organizations like... PLRC have been essential in raising awareness about #LongCovid and in advancing research into the disease... so that scientists can more clearly define the disease by clarifying its pathology and identify biomarkers"smithsonianmag.comFor Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them ReliefLong Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers 1102
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026"Since those early days... we have gained a much clearer picture of the condition... PLRC and other like-minded groups have outlined more than 200 associated symptoms, including... memory issues and post-exertional malaise, a uniquely punishing impairment" #LongCovidsmithsonianmag.comFor Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them ReliefLong Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers 192
Patient-Led Research Collaborative @patientled.bsky.social · 16/09/2026PLRC member @julialmv.bsky.social was just featured in @smithsonianmag.bsky.social — discussing her journey as a #LongCovid patient advocate and her work with PLRC. "The paper that collaboration yielded... has since been viewed online two million times, and it has been cited 4,000 times"smithsonianmag.comFor Many Americans, Covid Is Still a Chronic, Disabling Disease. These Scientists Are Working Tirelessly to Bring Them ReliefLong Covid saps the strength and vitality of patients, who have little recourse to fight it. A team of specialists—including an afflicted researcher working mostly from her bed—is looking for answers 24016
Reposted by Patient-Led Research Collaborativeplayon.bsky.social @playon.bsky.social · 15/09/2026#longdcovid thread 011
Reposted by Patient-Led Research CollaborativePatient-Led Research Collaborative @patientled.bsky.social · 15/09/2026We're thrilled to see positive results from @biovie.bsky.social's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM and/or cognitive impairment, with multiple significant and trending results, including objective cognitive tests. 1/ 25621
Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026This is an incredibly exciting development for the #LongCovid field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! 7/ bsky.app/profile/biov... 0277
Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026PLRC assisted on the advisory panel, study design, and recruitment and communication for this trial, and the patient engagement in the process was outstanding. The trial completed enrollment in less than a year. 6/ 1131
Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026Patient feedback also led to the trial allowing patients to stay on existing medications such as LDN and reimbursed enrollees for travel and lodging. 5/ 1121
