Chloé de Canson

@chloedecanson.bsky.social

Formerly assistant professor of philosophy • bedbound since 2022 with severe myalgic encephalomyelitis, a type of long COVID • philosophy of science, epistemology incl. social, and their history • chloedecanson.net • 🇵🇸

@chloedecanson.bsky.social

Wittgenstein: “Our language can be regarded as an ancient city: a maze of little streets and squares, of old and new houses, of houses with extensions from various periods, and all this surrounded by a multitude of new suburbs with straight and regular streets and new houses.” (PI §18)

@mecfsscience.orgReposted by @chloedecanson.bsky.social

1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.

@chloedecanson.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.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.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)
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