Chloé de Canson

The kind of sentence one would expect from Wittgenstein

1) 🇫🇷 France' public health insurance Ameli has updated its info on ME/CFS including sections critical of graded exercise and CBT. In this article, however, proponents of psychosomatic medicine explain how they pushed back to get some of the language changed.

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)

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.

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

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...

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...

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"

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”

Marcel Proust playing air guitar on a tennis racket appreciation moment

What it feels like trying to do history of philosophy

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.

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

Some stats from 2025. Average number of invites issued per paper was 6. The highest number of invites per paper was 17 (down on previous years, where it usually strays into the 20s). Securing referees takes about as long as referees take writing their reports.

Public health officials and the media are communicating as if there were only two possible outcomes to hantavirus infection: death and full recovery. This is despite already existing evidence that hantavirus, like many other viruses including COVID, has severe post-acute sequelae.

The case for routine patient review in long COVID research www.thelancet.com/journals/lan... Screenshot from latest Science for ME weekly update #LongCovid

1) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11

"Long COVID received 14% of its disability commensurate funding... ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding." Plus the LC disability weight of 0.21 likely underestimates its burden. www.nature.com/articles/s43...

Those researchers who routinely do patient involvement know the value of the insights of the people who actually have the disease To enable involvement of pwLC at all stages of research @longcovidsupport.bsky.social offer a Research Involvement Consultancy service. www.longcovid.org/research/res...

Yes. Now.

New comment The case for routine patient review in long COVID research www.thelancet.com/journals/lan...