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Chloé de Canson

@chloedecanson.bsky.social
534 followers 385 following 301 posts

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 • 🇵🇸

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Chloé de Canson @chloedecanson.bsky.social · 22h
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)
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Chloé de Canson @chloedecanson.bsky.social · 06/10/2026
Thank you for your kind words and for agreeing to be interviewed! The Sick Times does such vital work
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Chloé de Canson @chloedecanson.bsky.social · 06/10/2026
Thank you so much for your kind words! Hopefully one step at a time we'll manage to make a dent into the 'greatest medical scandal of the century' (@georgemonbiot.bsky.social)
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Chloé de Canson @chloedecanson.bsky.social · 06/10/2026
Thank you so much for your kind words, it means a lot!
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ME/CFS Science @mecfsscience.org · 06/10/2026
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.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Thank you for your kind words :)
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Kristin Meekes @kmeekes.bsky.social · 05/10/2026
Really important thread and paper ⬇️ #MedSky
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Thank you again for your willingness to be interviewed!
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Tom Kindlon @tomkindlon.bsky.social · 05/10/2026
I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" www.sciencedirect.com/science/arti... #MEcfs #PwME #epatient #epatients #CFS
Abstract
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
What the…
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
I really appreciate you intending to spend your energy on this! Hopefully you will find it interesting :)
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
You can read the paper (open access) here: www.sciencedirect.com/science/arti...
sciencedirect.com
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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).
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
It 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)
Photo of body bags laid out on the street in rows, with each of them having a name printed on it and a blue rose (the symbol by which people with ME honour their dead) deposited on top
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
The 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.com
Doctors as Patients (with subtitles)
YouTube video by Anil about ME
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Collectives 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.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
As well as @longcovidpharmd.bsky.social, @betsyladyzhets.bsky.social and @mileswgriffis.bsky.social from @thesicktimes.org, and @tessfalor.bsky.social from @renegaderesearch.bsky.social.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
I 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/
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
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
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Chloé de Canson @chloedecanson.bsky.social · 01/10/2026
Not a paper but this talk on very severe ME makes it clear that what’s going on is weakness rather than fatigue: youtu.be/-XfMAYUqgXw?... (see from 6:20 onwards)
youtu.be
Dr. Sabine Hermisson: The most severely affected – a caregiver's perspective (Day 2, Block 8)
YouTube video by UniteToFight
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Chloé de Canson @chloedecanson.bsky.social · 28/09/2026
🤍
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Chloé de Canson @chloedecanson.bsky.social · 14/08/2026
Thank you for this piece. Not a single healthcare professional cared when I was life-threateningly malnourished as a result of long COVID, but when I rapidly lost weight with hyperthyroidism, every healthcare worker around me jumped into action, showing me what competent healthcare looks like
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Chloé de Canson @chloedecanson.bsky.social · 14/08/2026
"Longtemps, je me suis couché de bonne heure."
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Chloé de Canson @chloedecanson.bsky.social · 14/08/2026
This was an incredible initiative, and the talks were amazing. Thank you so much for this work.
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Chloé de Canson @chloedecanson.bsky.social · 14/08/2026
I loved this!
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Chloé de Canson @chloedecanson.bsky.social · 06/08/2026
Kathleen Stock rehashing the old myth that ME is deconditioning just days after the publication in a Nature journal of a major study showing that mobile people with ME have muscle abnormalities that even people on strict 60-day bedrest don't www.nature.com/articles/s41...
These feelings may be frightening; but they also make you different, special, excused from the pressures of life, pleasingly fussed over by strangers. And if a person then spends a lot of time sitting or lying down, she will naturally become unfit, so that the next time she stands up or walks any distance she will feel even worse; and the cycle of confused self-interpretation will continue.
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Chloé de Canson @chloedecanson.bsky.social · 06/08/2026
Who could *possibly* have foreseen this
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Nick Barlow @nickbwalking.bsky.social · 06/08/2026
In a move that will surprise absolutely no one who's been paying attention, Stock has decided that women with disabilities are suffering from "social contagion"
A times column header beneath a picture of Kathleen Stock: " KATHLEEN STOCK
Why are young women using walking sticks?
A disproportionate number of Gen Z females are affected by vague syndromes and may be victims of social contagion"
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Chloé de Canson @chloedecanson.bsky.social · 04/08/2026
Incredibly important piece, thank you so much for publishing it.
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Chloé de Canson @chloedecanson.bsky.social · 27/07/2026
Congratulations!! :)
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Chloé de Canson @chloedecanson.bsky.social · 10/07/2026
Proust on the impossibility of intelligible experience without the application of the concept of cause: “it appeared a thing without cause, incomprehensible, a thing truly dark”
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Emily Herring @emilyherring.bsky.social · 11/10/2023
Marcel Proust playing air guitar on a tennis racket appreciation moment
A black and white photo from the early 20th century with a group of people smiling and taking various silly poses, holding tennis rackets and hockey sticks. Marcel Proust is in the middle of the photo on his knees holding a tennis racket like a guitar. He is smiling with a smile of pure silliness.
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Chloé de Canson @chloedecanson.bsky.social · 23/06/2026
Tout mon soutien, vraiment.
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Chloé de Canson @chloedecanson.bsky.social · 21/06/2026
What it feels like trying to do history of philosophy
Blurred photo of Obama on the left which reads “original”, and non blurred photo of a generic white guy on the right which reads “result”. The implication is that some computer programme has “recovered” or “unblurred” the photo of Obama, but they have clearly missed the point
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Chloé de Canson @chloedecanson.bsky.social · 18/06/2026
My mother didn’t want me to get it so I printed out a picture of a cancer-ridden cervix and put it on the fridge with the caption “THIS IS WHAT YOU WANT FOR ME”. It was effective
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Lola Germs @lolagerms.bsky.social · 17/06/2026
We would all be better off if infrastructure was updated to provide cleaner indoor air in public places, using technology that is already well understood and known to be safe-- it's just not happening.
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Chloé de Canson @chloedecanson.bsky.social · 13/06/2026
Just look at these graphics! Anyway, I cannot recommend this video essay strongly enough. It comes out next Sunday :)
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Chloé de Canson @chloedecanson.bsky.social · 13/06/2026
My brilliant friend Lola Germs has created a truly exceptional video essay on the history of the science of airborne disease transmission The video has it all: extremely rigorous science studies, bizarre and enthralling visuals, and a strong case for using existing technology to clean indoor air
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Chloé de Canson @chloedecanson.bsky.social · 07/06/2026
I feel you so hard on this
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Chloé de Canson @chloedecanson.bsky.social · 02/06/2026
I hear your point about people feeling they’re unlovable, but some people can never get married or have kids as a result of LC because they are just too sick. I haven’t been able to even sit up in years. There is no way I could have kids if I wanted to
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C.H. Romatowski @chromatowski.bsky.social · 30/05/2026
#MECFS question: Does anyone know of any document by an ME charity/organization/clinic that mentions the fact that people often already experience some symptoms before they fully develop ME? This could include the 'multiple hit' theory for instance.
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Chloé de Canson @chloedecanson.bsky.social · 25/05/2026
world differently and therefore come to form different beliefs about it)? I'm not sure it meets the reflexivity criterion so I'm leaving that one aside for now.
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Chloé de Canson @chloedecanson.bsky.social · 25/05/2026
Very very interesting! I wonder what you think of broadly Marxist political epistemologies whereby the explanation for beliefs is symmetrical and impartial at one level (beliefs arise from participation in the social world) but asymmetrical and partial at another (people participate in the social
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Chloé de Canson @chloedecanson.bsky.social · 25/05/2026
I’ve reached the three year mark since the last time I was able to stand up. Three years fully bedbound. Hard to put into words how profoundly long COVID and ME have altered my life
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Chloé de Canson @chloedecanson.bsky.social · 23/05/2026
Congratulations Richard :))
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