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Kym Deyn

@kymdeyn.bsky.social

Nuisance, writer, publisher - the devil's dandy - poetry & weird fic - tarot - https://linktr.ee/kymdeyn - she/they with MECFS. In books and in bogs.

1581 Posts2216 Follower1162 Folgt
C.H. Romatowski@chromatowski.bsky.social · 6h ago

That makes for more than 2M people disappeared from their communities by a disease that for decades has been NIH’s most underfunded, relative to its burden on the US population. This neglect has left ME with no FDA-approved treatments, and almost no existence whatsoever in the public consciousness.

Chart entitled NIH research funding for ME/CFS is just 1% of what its disability burden warrants, with Long COVID also heavily underfunded at 14% of commensurate levels NIH Funding Per Disease as a % of YLD-Commensurate Funding (FY22-24 Average) ME/CFS is at 1% of its funding commensurate with disease burden, below: Migraines 3% Long Covid 14% Anxiety Disorders 17% Schizophrenia 27% Eating Disorders 28% Depression 31% Asthma 34% Diabetes 43% Rheumatoid Arthritis 48% Endometriosis 58% Multiple Sclerosis 122% Epilepsy 138% Autism 163% IBD 196% Parkinson's Disease 326% Alzheimer's Disease 575% Macular Degeneration 685% HIV/AIDS 2603% Down Syndrome 2675% Data Sources: Bonuck et al. (2026), "Long COVID disability burden in US adults". Funding: NIH RCDC (FY22-24 average). Disease burden: IHME GBD 2021. Long COVID prevalence: CDC Household Pulse Survey. Notes: Long COVID funding shown is NIH RCDC only (14% of YLD-commensurate). Including the one-off $1.15B RECOVER emergency appropriation (2021) would raise Long COVID to ~53% of YLD-commensurate.
Kym Deyn@kymdeyn.bsky.social · 5h ago

My mum has really struggled around losing our cat a couple of years ago, and about a year ago I bought her a plushie weighted seaslug and apparently she cuddles it every night because it's like having a little animal beside her 😭

Kym Deyn@kymdeyn.bsky.social · 7h ago

Few people realise how debilitating and serious Severe ME/CFS is and how utterly shocking and cruel it is that medical professionals still suggest graded exercise Therapy despite it being proven to worsen symptoms

eli@elipheleh.bsky.social · 9h ago

for the sake of #SevereMEDay, heres what a normal day and a crash day look like. crash ended up in 2 parts, sorry. in a crash day i might manage an eyes-shut watch of a tv show from before the 2000s, with audio description. not always though. ( @meactnet.bsky.social )

normal day: woken for meds, go back to sleep. wake again, put my tshirt on, use the bathroom, i’m bought lunch. eat that & take meds, while rewatching something low energy & familiar on the tv. take meds. lay back down. scroll through various social medias, scroll muted TikTok. text friend (only one who takes almost no energy to text). maybe have short visit, 5 minutes. probably use the bathroom at some point. dinner bought to me, eat sat up, watching calm 10m youtube video on quiet. take meds. head into lie down on the sofa, maybe (re)watch something, usually mainly listening to it though. scroll on my phone. maybe comment a few things. text friend. use the bathroom at some point. meds time, bought a snack, sit up and watch 5m of something. sit up at laptop, legs crossed (feet not down on the floor), scroll or look at things i’m potentially going to buy. this lasts about 40m. meds time 2, assisted. head back to sofa for a couple hours, lying down or half-reclined. usually watch something low energy. head to bed to scroll & then eventually sleep.
Sarah Z@sarahz.bsky.social · 9h ago

Steven Universe honestly whipped as a show. it’s so funny how mad so many people got specifically because it was baby’s first toxic yuri and people would be like wtf… why are all these lesbians being so toxic to each other… they were doing such insane shit to each other it ruled

D A V I E M O O@daviemoo.bsky.social · 2d ago

The fact trans people are dying because medical professionals are more bothered about where they can lie down in bed than treating them is a stain this country should never be allowed to forget.

sja@sam-ja.bsky.social · 2d ago

i'd recommend people read the response from an LGBTQ+ cancer charity to last year's EHRC proposed guidance - been thinking a lot about this particular section ever since i first read it (full response here outpatients.org.uk/2025/06/26/e...)

sja@sam-ja.bsky.social · 2d ago

i'd recommend people read the response from an LGBTQ+ cancer charity to last year's EHRC proposed guidance - been thinking a lot about this particular section ever since i first read it (full response here outpatients.org.uk/2025/06/26/e...)

Screenshot of article reading: "The suggestion that transgender people should only be accommodated in side rooms is unfeasible. As anyone in healthcare knows, available side rooms are a rare commodity. If their use was mandated for all transgender patients it would largely be unenforceable. It is necessary to consider the broad variety of people who require side rooms and their availability across the NHS. As per NHS Estates documents, increased floor area, capital cost, management, and staffing issues also need to be considered. If a redrafted single-sex accommodation policy aligns with the EHRC’s Code of Practice, we feel that it could leave transgender people without reliable accommodation options, putting their clinical outcomes at risk."Quote from article '“Let us take the example of Joelle, a trans woman who died of an eminently treatable cancer after waiting for eight days on a general ward, because clinicians could not agree whether she should be placed on a men’s ward or a women’s ward. The delay in treatment cost her her life.” -Dr Roz Savage, MP'
Elizabeth Taylor@elizabethtaylor47.bsky.social · 2d ago

Yvette Cooper confirming that NHS guidance is coming forth shortly banning trans people from single sex wards. She waffles about ‘alternative provision’ but let’s be realistic here, this will massively massively disadvantage trans people’s care. Fuck Andy Burnham

Damon Young@damonyoung.com.au · 2d ago

There are disability scholars and activists who’ll no doubt give this bullshit the criticisms it deserves, so I will merely ask: Is a requirement for being a terf that you simple *refuse* to recognise others’ embodiment?

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
Miranda Keeling@mirandakeeling.com · 4d ago

Little girl on the train: Uncle Mallory died. Her mum: Yes. Little girl: So he won't feel anything now. Her mum: No. Little girl: Which is good because the insects will be eating his eyes.

Shiv Ramdas Mens Rice Activist@nameshiv.bsky.social · 4d ago

we are at the point where huge swathes of the media sees their only job as getting attention from the public and giving nothing back and you're supposed to juuust tell enough truth that you can't be called an outright liar, just get the click anyhow, it is used car sales masquerading as journalism

Gareth L. Powell / G.L. Powell@garethlpowell.bsky.social · 4d ago

It’s like how there was that one professor who thought the recent interstellar asteroids were likely to be alien spaceships, and even though the rest of the scientific community disagreed with him, it was reported as “scientist says…”

Kym Deyn@kymdeyn.bsky.social · 6d ago

this is my favourite thing William Stukeley ever said. let's just reflect on the Ancient Egyptians, Plato and the Druids AND ALL of the HEATHEN PHILOSOPHIES having a true "CHURCH OF ENGLAND" appreciation for the Doctrine of the Trinity. did you know that Mentuhotep III was an anglican??

Kym Deyn@kymdeyn.bsky.social · 6d ago

many apologies to inflict any part of my undergrad dissertation on anyone, but fundamentally William Stukeley is not a man to take seriously

“he can demonstrate that the ancient egyptians, plato, our old Druids and all the heathen philosophies had a true, Church of England appreciation for the Doctrine of Trinity.” There is, of course, Stukeley’s famous pronouncement that the religion of the druids was “so extremely like Christianity that in effect if differed from it only in this: that they believed in a messiah who was to come into this world and we believe in him that is come”
Gav Thorpe@gavthorpe.bsky.social · 6d ago

People talk about Creative Freedom but limitations demand more creativity than absolute free rein. Even if that’s simply the limitations of medium. This is the main reason big budget movies usually have some of the weakest stories.

Mags Visaggio - Writer and Writing Coach for Hire 🏳️‍⚧️@magsvisaggio.com · 6d ago

I miss when cable TV had absolutely no money and tons of airtime to fill so they'd be like fuck it what about a guy and a puppet make fun of movies? what if we just take all this old cartoon shit we have and make a talk show?