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Ellie

@madknittrsteaparty.bsky.social
341 followers 224 following 572 posts

Love crafts, history, stories, natural world & spending time with husband, children, family & friends. When M.E /CFS & POTS doesn't stop me - which is most of the time right now. Usually found in a dressing gown. Devon, UK ♿🌿🏳️‍🌈🏳️‍⚧️🕊

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Reposted by Ellie
Carole Bruce @cabruce.bsky.social · 15h
"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding." The Olympic sprinter now bedbound for 22 hours a day with #ME www.bbc.co.uk/sport/athlet...
bbc.co.uk
Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis
Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.
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Grace Blakeley @graceblakeley.substack.com · 10h
Profits generated by AI firms in one part of the global economy are being sucked into US equity markets, fuelling the boom even further. This kind of circularity is typical of periods of overaccumulation - and these tend to end in globe-spanning crises. graceblakeley.substack.com/p/the-ai-mon...
graceblakeley.substack.com
The AI money loop
The AI boom has brought back the global imbalances that fuelled the financial crisis. Plus, SoftBank’s bet on the Gulf, and the call centre workers in Manilla losing their jobs to chatbots.
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Miranda Keeling @mirandakeeling.com · 10h
I know, it's early but if you like to plan, here's a Christmas gift ideas list from me 🎁 1. My new book: geni.us/ThePlaceImin 📚 2. My first book: tinyurl.com/MirandaKeeling 📚 3. Membership of my Patreon tiers: www.patreon.com/mirandakeeli... (you'll need to sign up as a free member first) 🎉
The Place I'm In photographed against a wood-effect background. Illustrations by Adam Beer. Book is pale pink, hardback.My book The Year I Stopped to Notice on a white background. Illustrations by Taaryn Brench.My short stories on a wooden floor. One of them held open.
Inspiration for my Journal tier: post it notes, postcards of cats, a pen, a stick, a pebble and a sharks tooth.
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Mayor Zohran Kwame Mamdani @mayor.nyc.gov · 12h
Black text on a white background
“More than 100 elected officials have joined me in calling on parking lot and garage owners across New York City: Don’t give ICE a place to operate. Don’t rent to them. Tell them they’re not welcome.

Last week, ICE agents shot Oscar Belgal in the neck in Marble Hill while his 5-year-old son sat in the car. They had been staging nearby in a private parking lot.

Our city laws keep ICE off public property. Now, we’re calling on private property owners to do the same. One garage on Morton Street already removed ICE vehicles after neighbors spoke out. Every owner has that power.”
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Zack Polanski @zackpolanski.bsky.social · 10h
My friend and colleague @mothinali.bsky.social is a hero, working to heal divisions. His win today against right wing smears is not only for him but for all global majority politicians whatever party they serve in their fight against lies and abuse. www.thenational.scot/news/2664344...
thenational.scot
Green deputy hails victory against GB News pundit in riot smear row
A DEPUTY leader of the Green Party of England and Wales has claimed victory in a defamation battle against a GB News pundit and social media personality who smeared him as participating in a riot.
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Samantha (she/her) @samjamwich42.bsky.social · 16h
This is so helpful - it tells you where the cheapest private vaccines are available and has a link to the pharmacy to book them.
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James Kennedy @jameskennedy.bsky.social · 15/10/2026
Sick of AI? Sick of social media? Sick of the tech bro's? Us too so we made a song about it. 'Kill the Machines' is available on all platforms now but it ohly works if you play it really loudly. Hope you like it ✊️ youtu.be/07dH9uThp78?...
youtu.be
James Kennedy and The Underdogs - Kill the Machines - Official Music Video
YouTube video by JAMES KENNEDY and The Underdogs
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Anil van der Zee @anilvanderzee.bsky.social · 11h
My thoughts about the film Complicated, with children who have EDS/hEDS, where they and their families are not being take seriously. With child protective services as a result. Medicine needs to do better! www.facebook.com/share/p/1XDf... #EDS #hEDS #pwme #myalgicE #millionsmissing
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 9h
This is the disease for which I research and advocate: #MECFS. Even mild presentation is life-changing, and this is what severe looks like. People are surprised so many of us were athletes. They want to believe this can only happen to people who were already unwell. www.bbc.com/sport/athlet...
bbc.com
Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis
Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.
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Ellie @madknittrsteaparty.bsky.social · 15/10/2026
This looks wonderful. I hope to have enough spoons to read at some point. I also hope that as it is an academic paper it will be more likely to reach and be read by doctors and medical students.
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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
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
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
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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Shannon Knight @shannonknight.bsky.social · 14/10/2026
"It is interesting to remark that this ignorance about ME is not just systemically produced, but also systemically maintained." "Doctors' ignorance about ME is therefore, in a certain sense, chosen or preferred."
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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 15/10/2026
#Ireland Our Christmas card page is now up irishmecfs.org/store Wide selection: 15 packs with English or English & Irish verses 10% of gross amount goes to our research fund Shops don't get a cut so more goes to charity Reposts welcomed #MEcfs #PwME #speirgorm #spéirgorm #speirghorm #spéirghorm
All profits from the Christmas cards go to the Irish ME/Chronic Fatigue Syndrome Association (an all-volunteer organisation) with a cartoon image including a Santa Claus and presents
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George Monbiot @georgemonbiot.bsky.social · 15/10/2026
I'm on Question Time tonight, in Brecon. The other panellists are currently from Reform, the Conservatives, Plaid Cymru and Labour. Though, given the rate of resignations and defections in Wales, that might change by 9pm this evening. www.bbc.co.uk/programmes/m...
bbc.co.uk
BBC One - Question Time, 2026, 15/10/2026
Fiona Bruce presents an hour of topical debate from Brecon.
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Louis Römer @lromeranth.bsky.social · 14/10/2026
It is noticeable that the BBC is prioritizing this story and is not trying to make the white woman Oxford lecturer who has recently been found to have child pornography in her computer into the next face of intellectual misconduct.
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Natalie Bennett @nataliegreenpeer.bsky.social · 14/10/2026
We can't seriously expect people to choose rail when it costs three times as much as flying. We need a clear duty on the Secretary of State and Great British Railways, to improve the affordability of travelling by train and make fares fair.
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The Green Party of England & Wales @greenparty.org.uk · 13/10/2026
🚨 GREEN WIN VS REFORM 🚨 Congratulations to Amber Valley Green Party on electing new councillor Bess Saunders in Kilburn, Denby, Holbrook & Horsley ward in Derbyshire 💚
Amber Valley Borough Council
BY-ELECTION WIN
GREENS WIN VS REFORM

Kilburn, Denby, Holbrook & Horsley

GRN 29.5%
REF 27%
CON 17%
LAB 16%
RES 11%

Green Party
Promoted by Chris Williams on behalf of the Green Party of England and Wales, c/o PO Box Green Party, London, SE1P 6YL
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George Monbiot @georgemonbiot.bsky.social · 14/10/2026
Palantir didn't have to evade the UK's controls on lobbyists to get astonishing, unminuted access to government ministers and officials, or even to hire them to lobby their colleagues. Why not? Because there aren't any. My column. www.theguardian.com/commentisfre...
theguardian.com
Palantir is worming its way into the British state – it’s time to curb this controversial US company’s influence | George Monbiot
Tom Watson has said ‘mob rule’ must not decide public contracts. Perhaps he should take a look at his new employer, says Guardian columnist George Monbiot
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Rob Delaney @robdelaney.bsky.social · 13/10/2026
And here’s the trailer for BEING HEUMANN. In cinemas Nov 6, streaming on AppleTV Nov 13. I saw it last night at the London Film Festival & it’s a triumph.
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Alice Roberts @profaliceroberts.bsky.social · 14/10/2026
“You could almost believe that the real purpose of government was to do the bidding of corporations, foreign states and the ultra-rich... Will Burnham allow the mob rule of private business to keep dominating our lives…?” @georgemonbiot.bsky.social asks: www.theguardian.com/commentisfre...
theguardian.com
Palantir is worming its way into the British state – it’s time to curb this controversial US company’s influence | George Monbiot
Tom Watson has said ‘mob rule’ must not decide public contracts. Perhaps he should take a look at his new employer, says Guardian columnist George Monbiot
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Zack Polanski @zackpolanski.bsky.social · 14/10/2026
1) An emergency brake on rents - rising by the LOWEST of CPI inflation, wage growth, or 2%. 2) A commitment to protecting social security - not pitting people on benefits against spending on weapons. 3) Energy in public hands and a energy revolution now - cutting bills for everyone, forever.
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Zack Polanski @zackpolanski.bsky.social · 14/10/2026
Two weeks until the budget and here's what we're facing: The worst squeeze in living standards since 1961. The cost of renting to rise by 4% or 5% a year Household energy prices set to jump by £276 We need serious action not tweaks or half measures. That means 👇
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Chaminda Jayanetti @cjayanetti.bsky.social · 13/10/2026
Fraser Nelson is involved in the Times' "welfare inquiry", and he's basically got the late-2000s Iain Duncan Smith "I want to crush the benefits system out of kindness" shit down to a tee. Utterly vile individual.
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Chaminda Jayanetti @cjayanetti.bsky.social · 13/10/2026
Top three articles on the Times website are currently a barrage of hate against funding for disabled people, including an attack on Access to Work *which is money to help disabled people find/stay in paid work*
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Alom Shaha @alomshaha.bsky.social · 13/10/2026
People with a learning disability should not have to go through unnecessary PIP reassessments. If you agree, please co-sign this letter from @mencap.org.uk
secure.mencap.org.uk
End unnecessary PIP reassessments
A learning disability is lifelong. It doesn't change, so why are people asked to prove it again and again? That’s why Mencap is calling for an end to unnecessary PIP reassessments for people with a le...
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Mark Grimshaw @markgrimshawtism.bsky.social · 09/10/2026
A fascinating editorial decision from the BBC, to make the headline a scaremongering “AUTISM AND ADHD ARE BEING OVERDIAGNOSED”, and then, four bullet points later, have the author of the report quoted as essentially saying “nah, that’s bullshit, actually”.
ADHD and autism at risk of over-diagnosis, says report, as author warns of rise in mental ill health
Summary
• An official review in England finds there is a risk of people being over-diagnosed with
ADHD and autism - three key findings from the report
• As well as neurodevelopmental conditions, the review looks at mental ill health, particularly in younger people. Our health correspondent explains the difference
• It was commissioned earlier this year after Wes Streeting, then the health secretary, said there was an "over-diagnosis" of mental health conditions
• Speaking to Radio 4's Today programme earlier, review chair Prof Peter Fonagy said Streeting was "with respect, completely wrong"
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Frances Ryan @francesryan.bsky.social · 13/10/2026
“Welfare has become an economic opiate,” the Centre for Social Justice says today in a landmark report on Britain’s “worklessness crisis.” Which is funny because I only had to start taking codeine when I got chronically ill? You’re almost there, lads! Just join some dots!
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Ellie @madknittrsteaparty.bsky.social · 12/10/2026
It's nuts isn't it. You try to enjoy the moments fully in case it doesn't last, but without overdoing it. Impossible. So far I've never got the balance right! I'm glad that you may have had some better moments though❤️
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Oppklipt @oppklipt.bsky.social · 01/10/2026
No one tells you how scared you’ll be when you experience some relief from ME. Scared that if you get too excited and do too much, you’ll end up right back where you were.. and when you have a bad day you’ll think that you ruined everything. That’s a horror movie plot if I ever saw one.
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The Partial Historians 🏺 @partialhistorians.bsky.social · 12/10/2026
✨Cave Canem✨ We’re not saying this excellent doggo is particularly dangerous, but they are guarding the Casa di Paquius Proculus in Pompeii, so best be careful! Also this doggo comes with a labrys (double axe) and a shield and spear! #MosaicMonday #AncientRome
This mosaic comes from the Casa di Paquius Proculus in Pompeii. The mosaic depicts a black dog with a red collar chained to a pillar. Also depicted are what look like a labrys (double axe) and a shield and spear.
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Maike Osborne @maosbot.bsky.social · 12/10/2026
"Adding my pronouns would be performative" "I don't want to make it about me" "I'd feel I was appropriating" As a trans woman, I LOVE it when cis folk include their pronouns on badges/signatures/etc. It means that sharing mine doesn’t single me out, and it tells me who is safe!
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Adam @abrokenbattery.bsky.social · 12/10/2026
Clip subtitles by Fiona Hart. Full video - Long Covid: Annabelle battles ME/CFS (17 mins) www.kika.de/story-time/v...
kika.de
STORY TIME: Long Covid: Annabelle kämpft gegen ME/CFS - Jetzt streamen!
Annabelle muss die meiste Zeit im Bett liegen. Seit einer Corona-Infektion ist sie dauerhaft krank. Turnen, Schule, draußen spielen: Sie wünscht sich zurück, was ihr früher Spaß gemacht hat.
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Adam @abrokenbattery.bsky.social · 12/10/2026
“The time in hospital was awful for her. She had a very severe crash and could not sit and because of that she was brought home lying down in an ambulance.” 9 year old Annabelle’s mum talking about her #MECFS which she developed following Covid. #LongCovid
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Adam @abrokenbattery.bsky.social · 11/10/2026
“I can’t even get dressed by myself anymore or press buttons or things like that.” 9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid
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Esther @elhopkins.bsky.social · 12/10/2026
@andyburnham.bsky.social Surgical masks have gaps! Respirators seal to the face.
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Frances Ryan @francesryan.bsky.social · 11/10/2026
“Jimmy McGovern grabs you by the throat, asking you to question whether it’s possible to change or if the horrors of the system dooms certain people – certain children – before they ever really get a chance.” My preview of tonight’s new series of Time. www.theguardian.com/tv-and-radio...
theguardian.com
Time: David Tennant and Siobhan Finneran are stellar in this horrifying and exceptional TV drama
Jimmy McGovern’s grab-you-by-the-throat prison show is back and it could hardly be more urgent, prescient or excellent. Brace yourself though … Bake Off it is not
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Kate U @kateullman.bsky.social · 11/10/2026
I don't visit Dartmoor often enough even though I drive to Plymouth every day for work. So I enjoyed meeting a recently retired colleague for a walk after school on Friday - it rained all day until just before we started our walk. Down Tor stone row and ring cairn. Happy #StandingStoneSunday !!
A colour photo of moorland with a ring of stones - remains of a cairn in the foreground and a stone row leading away on the left of the picture.
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Paul Chamberlain @paulchamberlain.bsky.social · 11/10/2026
Callanish VIII , Isle of Lewis this morning #StandingStoneSunday
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Laura @laurajerramp.bsky.social · 10/10/2026
Does anyone know how to access this Nuvaxovid vaccine in the UK? Has anyone succeeded in getting it? I’m told that this is a good version of the Covid vaccine for those who are clinically vulnerable & that it’s approved for use in the UK. But is it available pls? #longcovid #medsky #publichealth
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Ian Pethick @ianpethick.bsky.social · 06/10/2026
So, Jeffrey Archer got into Oxford on the back of made up A level results and a non existent degree from an American university. Interesting to compare the different reaction from media and politicians to that which was handed out to Professor Jason Arday.
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Rachel Charlton-Dailey @rachelcdailey.bsky.social · 18/09/2026
My health has worsened, and I'll be taking most of October off to undergo immunotherapy. When I come back, I'll be freelance. Journalism, research, talks, and anything else I can do remotely from under a blanket. If you want to work with or support me: linktr.ee/rachelcdailey
linktr.ee
Rachel Charlton-Dailey Official: TikTok, Instagram, X | Linktree
Disability rights & sausage pics. Chief DWP botherer/ journalist at The Canary. Author of Ramping Up Rights.
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Adam @abrokenbattery.bsky.social · 10/10/2026
Thoughtful comment from a UK medical student on The #MECFS Scandal.
I’m a current medical student in the UK who as of yet knows very little about ME, but has of course seen it come up in a lot of online discourse. I’m also coincidentally very interested in pursuing either psychiatry or neurology (or a mix of both), and academia. I also have a background in neuroscience.

All of that to say, it’s upsetting to hear that bad research has very rightly led to a breakdown in trust between patients with ME and doctors, has in many cases made things worse and has caused untold damage to people’s lives. The worst part is being unfairly dismissed. I cannot begin to imagine how frustrated and hopeless that must make patients that feel. I’m sorry. I’ll do my part to learn more about the condition. Poor research has made things worse, but hopefully one day more rigorous research can find some treatments for ME. That’s the least patients deserve (as well as being heard).
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 10/10/2026
Today, Lifeboat Saturday, I’d like to pay tribute to the many brave men and women who volunteer for the #RNLI, risking their lives to save others in grave danger. I’m appalled at the abuse and intimidation faced by RNLI crews in recent weeks. Let’s support and celebrate this incredible charity.
Tessa Munt MP with Marie Goldman MP and Sarah Gibson MP visiting the Brighton Lifeboat Station.
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Marcus Chown @marcuschown.bsky.social · 09/10/2026
Tom Watson. Palantir appointment. Reputation laundering.
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Rachel Charlton-Dailey @rachelcdailey.bsky.social · 09/10/2026
The report actually highlights that successive governments have failed people with ND & MH conditions & sets out a plan to change that. But that's undermined by the fact that the DHSC has very clearly briefed the press on its overdiagnosis agenda. Which the report disproves
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