Chloé de Canson @chloedecanson.bsky.social · 22hWittgenstein: “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) 040
Chloé de Canson @chloedecanson.bsky.social · 06/10/2026Thank you for your kind words and for agreeing to be interviewed! The Sick Times does such vital work 010
Chloé de Canson @chloedecanson.bsky.social · 06/10/2026Thank 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) 010
Chloé de Canson @chloedecanson.bsky.social · 06/10/2026Thank you so much for your kind words, it means a lot! 010
Reposted by Chloé de CansonME/CFS Science @mecfsscience.org · 06/10/20261) "... 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. 18428
Reposted by Chloé de CansonKristin Meekes @kmeekes.bsky.social · 05/10/2026Really important thread and paper ⬇️ #MedSky 1206
Chloé de Canson @chloedecanson.bsky.social · 05/10/2026Thank you again for your willingness to be interviewed! 030
Reposted by Chloé de CansonTom Kindlon @tomkindlon.bsky.social · 05/10/2026I 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 45727
Chloé de Canson @chloedecanson.bsky.social · 05/10/2026I really appreciate you intending to spend your energy on this! Hopefully you will find it interesting :) 010
Chloé de Canson @chloedecanson.bsky.social · 05/10/2026You can read the paper (open access) here: www.sciencedirect.com/science/arti...sciencedirect.com 0185
Chloé 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). 2242
Chloé 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 1150
Chloé 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) 1140
Chloé 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 1204
Chloé 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. 1170
Chloé 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: 1190
Chloé 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. 1150
Chloé 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. 1180
Chloé 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/ 1162
Chloé 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. 1190
Chloé 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. 814863
Chloé de Canson @chloedecanson.bsky.social · 01/10/2026Not 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.beDr. Sabine Hermisson: The most severely affected – a caregiver's perspective (Day 2, Block 8)YouTube video by UniteToFight 140
Reposted by Chloé de CansonGeorge Monbiot @georgemonbiot.bsky.social · 24/09/2026Here'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.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges 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 17925351729
Chloé de Canson @chloedecanson.bsky.social · 14/08/2026Thank 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 180
Chloé de Canson @chloedecanson.bsky.social · 14/08/2026"Longtemps, je me suis couché de bonne heure." 020
Chloé de Canson @chloedecanson.bsky.social · 14/08/2026This was an incredible initiative, and the talks were amazing. Thank you so much for this work. 010
Chloé de Canson @chloedecanson.bsky.social · 06/08/2026Kathleen 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... 0122
Reposted by Chloé de CansonNick Barlow @nickbwalking.bsky.social · 06/08/2026In 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" 2593034494
Chloé de Canson @chloedecanson.bsky.social · 04/08/2026Incredibly important piece, thank you so much for publishing it. 050
Chloé de Canson @chloedecanson.bsky.social · 10/07/2026Proust 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” 020
Reposted by Chloé de CansonEmily Herring @emilyherring.bsky.social · 11/10/2023Marcel Proust playing air guitar on a tennis racket appreciation moment 638791
Chloé de Canson @chloedecanson.bsky.social · 21/06/2026What it feels like trying to do history of philosophy 170
Chloé de Canson @chloedecanson.bsky.social · 18/06/2026My 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 110
Reposted by Chloé de CansonLola Germs @lolagerms.bsky.social · 17/06/2026We 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. 28240
Chloé de Canson @chloedecanson.bsky.social · 13/06/2026Just look at these graphics! Anyway, I cannot recommend this video essay strongly enough. It comes out next Sunday :) 040
Chloé de Canson @chloedecanson.bsky.social · 13/06/2026My 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 252
Chloé de Canson @chloedecanson.bsky.social · 02/06/2026I 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 191
Reposted by Chloé de CansonC.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. 5269
Chloé de Canson @chloedecanson.bsky.social · 25/05/2026world 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. 220
Chloé de Canson @chloedecanson.bsky.social · 25/05/2026Very 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 140
Chloé de Canson @chloedecanson.bsky.social · 25/05/2026I’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 0100