Patient-Led Research Collaborative

@patientled.bsky.social

Patient-Led Research for #LongCovid! http://patientledresearch.com

@patientled.bsky.social

"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.” #LongCovid

@chloedecanson.bsky.socialReposted by @patientled.bsky.social

But 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).

@chloedecanson.bsky.socialReposted by @patientled.bsky.social

The 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

Cover of Impure ScienceCover of AgnotologyCover of Pilules Roses
@chloedecanson.bsky.socialReposted by @patientled.bsky.social

The 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.

Anti-vaxxers should not be confused with pro-vax but vaccine-injured people. Although generally safe and effective, vaccines can in rare cases cause a condition which bears striking resemblance to IACCs such as ME and Long COVID (Bhattacharjee et al., 2025). Known ME triggers include a variety of immune insults, including (viral, bacterial, and parasitic) infections, but also physical traumas such as surgery and car accidents (Salit, 1997). This suggests that any acute activation of the immune system, including vaccination, could potentially trigger ME. Like almost every aspect of ME, this requires more research.
@chloedecanson.bsky.socialReposted by @patientled.bsky.social

I 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:

For example, some people with ME have noticed that their condition improves with mould avoidance, and reported back to institutional researchers so they might study this aspect of the disease: I discussed mine and other patients' direct observations about how toxigenic mold exposure impacts our conditions with patient- researchers interested in the subject. In particular we’ve discussed impacts of mold toxicity on PEM, immune dysfunction, and mitochondrial dysfunction in the setting of ME. We then prepared a document to present to ME researcher Rob Phair, answering his questions about how I experience PEM and how mold exposure, and not just exertion, impacts it. I hope to continue formalizing patient knowledge about mold toxicity so that it can be accurately and proportionately represented in the scientific literature about ME, and be investigated as a relevant and significant facet of and contributor to the disease. (Lara Goxhaj)
@chloedecanson.bsky.socialReposted by @patientled.bsky.social

In 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.

@chloedecanson.bsky.socialReposted by @patientled.bsky.social

Why 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.

Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
@patientled.bsky.social

"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."

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