kacheston.bsky.social
Researching “the greatest medical scandal of the 21st century”. Infection-Associated Chronic Illness, activism, stigma, medical humanities. Postdoctoral fellow in Sociology.
49 posts
864 followers
236 following
Regular Contributor
Active Commenter
comment in response to
post
I'm really glad to hear this, Sally - thank you for sharing. These harmful beliefs are so insidious, I can really empathise.
comment in response to
post
I'm sure I'll be able to track it down!
comment in response to
post
Thanks, Carole - it really was.
comment in response to
post
Thank you so much, @valerieeliotsmith.bsky.social
comment in response to
post
This is brilliant! Exactly what I was looking (and, in fact, am still looking) for - thank you ever so much for sending it over
comment in response to
post
Thank you so much, Veronica! 💜 (Also, did you see the reference to dangerous narratives in the final paragraph of the Opinion piece? I didn’t have enough words to address it in my response - perhaps something for another time…)
comment in response to
post
ALT TEXT - apologies, part of the alt text had been cut off in the original image/post. I've included it again, in two parts.
comment in response to
post
Thank you so much for letting me know! Sorry about that - I'll add to the thread and insert it again
comment in response to
post
Thanks for drawing my attention to this, Tom. I've submitted a response.
bsky.app/profile/kach...
comment in response to
post
I normally choose not to share my experiences of ME/CFS; I don't believe that 'recovery narratives' are helpful in these contexts (which is a long story, perhaps for another time).
However, recovery is so frequently mobilised in ways that are harmful, so I wanted to present a different viewpoint.
comment in response to
post
No I missed that one - thanks so much for linking! Wow... the mind boggles. (And going back to your point in an earlier post - this is people's lives. Why is more care not taken by researchers?!)
comment in response to
post
Yes, absolutely!
And also, be able to sit with not knowing all the answers. Reform what counts as success within academic research - the pressure to publish 'world-leading' outputs surely hinders the ability to say, 'right now, we have no idea, but people who live with it say xyz...'
comment in response to
post
Oh no need for apologies at all! Totally with you in feeling furious.
I had to trawl through the literature for my PhD. What angered me most was how *bad* it was. Misquoting studies, missing footnotes, unproven claims (etc etc). How can something so mediocre (at best) be so life-changing...?!
comment in response to
post
Ah, yes - I'm all too aware of this! It was v clear from their well-phrased letter. I was trying (perhaps failing?) to pose some pointed rhetorical questions.
comment in response to
post
What can all of this tell us about how health research itself must be transformed? We cannot and will not make discoveries if we already believe we hold all the answers. We need a new approach to health research into situations of poorly understood, ill-defined - yet severe, significant - suffering.
comment in response to
post
How is it that the gaps in our collective knowledge come to be filled by 'enthusiastically held hypotheses [...] yet to be evaluated or falsified' (MRC, 2003)? Why are leading scientists struggling to get funding for their research into this particular disease? Why does belief reign over evidence?
comment in response to
post
Their reference to 'the explanatory power of recent symptom science' is surely undermined by excerpts from the transcripts from these consultations (as reported here pmc.ncbi.nlm.nih.gov/articles/PMC...)
A 'kind of processor' in the brain, 'the fight or flight thing' - this hardly seems scientific!
comment in response to
post
Post-pancakes Paddington pilgrimage it is...! (I'm so excited to see you!!)
comment in response to
post
Visit to Paddington shrine is optional tomorrow, @arielswyer.bsky.social (before/after pancakes...)
comment in response to
post
'Hope you get better soon'
comment in response to
post
One of the letters appears to feature vague anti-Trump themes:
comment in response to
post
Meanwhile, the bench is currently a shrine - and features, as of this morning, seven jars of marmalade, four sandwiches, and two letters.
comment in response to
post
Two arrests were made; bear was recovered and headed ‘to Newbury police station for a much-needed marmalade sandwich’.
comment in response to
post
There was a brief psychic interlude (paging @arielswyer.bsky.social).
'Spooky.'
comment in response to
post
And revealed a worrying local proclivity for capital punishment & public shaming:
‘Make them stand in market square covered in marmalade with a nearby wasps nest’
‘When they catch them, maybe some stocks should be set up near the bench’
‘Bolt them to the bench until the bear is restored!’
comment in response to
post
The 'Paddington murder’ emphasised deep-seated local rivalries:
comment in response to
post
Marmalade tributes grew exponentially:
comment in response to
post
The crime was discovered at 8am. By 10am, a garish pink ‘Visit Newbury’ gazebo had been placed over the crime scene, and by 12pm: ‘He’s in a body bag!’
comment in response to
post
Thank you so much, George, for this excellent thread and article.
This last post reminded of Jen Brea's TED Talk www.youtube.com/watch?v=Fb3y... and her thoughts on science and medicine as 'profoundly human endeavours'.
Who wants to believe that a simple viral infection can cause such suffering?
comment in response to
post
And linking more information on these activist efforts regarding files on ME held at the National Archives: valerieeliotsmith.com/2015/01/20/t...
comment in response to
post
Indebted to stellar activist efforts in opening up these previously closed files as I begin work on a new project investigating what @georgemonbiot.bsky.social recently termed the 'greatest medical scandal of the 21st century'.
www.theguardian.com/commentisfre...