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tornandfrayed.bsky.social

@tornandfrayed.bsky.social
56 followers 124 following 20 posts
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Richard Vallée @richardvallee.bsky.social · 26/09/2026
There is really an immense failure at the top of the health care industry. No strategic thinking. Essentially wasting billions in funds to sacrifice tens of millions of lives and the net result is trillions in resulting losses and moral degeneracy. It was always cheaper to work at solving it.
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Eleanor Fielding @meownersclub.bsky.social · 26/09/2026
Great coverage and great thanks to @georgemonbiot.bsky.social If you’re brain-fogged here is a visual sunmary of the article
#ME and Long Covid

The science has moved on
Clinical practice has not

WHERE'S THE PUBLIC INQUIRY?
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
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...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes 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
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 24/09/2026
Thank you so much, George, and @tessamunt.bsky.social too.
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Rose Mary @rose-mary-x.bsky.social · 21/09/2026
Please include Savannah and others - very severe patients who are treated completely inappropriately in hospital. She couldn’t eat but they would put bags of crisps next to her to ‘tempt’ her !! bsky.app/profile/viol...
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Lindsay Skipper @lindsayskipper.bsky.social · 21/09/2026
Are you interested in how other services (ie other medical services we may need to rise eg gp) are not accessible for people with ME/ LC? ie they won’t make neccessary adjustments so that we can attend safely and minimising PEM? Not sure if that fits but it is an issue many of us struggle with.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 21/09/2026
Thank you for doing this, George. It's much needed. As you can see from the other replies, the publication of the NICE 2021 Guidelines and the Delivery Plan hasn't made any difference in how we are treated.
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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 18/09/2026
There is now an ME page on the HSE website. It includes details for the Lived Experience Groups that are still recruiting "people living with ME and those who support them" healthservice.hse.ie/staff/inform... #MyalgicEncephalomyelitis #PwME
HSE logo

Pay
Pensions and Retirement
Leave
Staff 
Information for healthcare professionals

Myalgic Encephalomyelitis (ME)
Myalgic Encephalomyelitis (ME) is a serious, long-term complex disease that affects multiple body systems and can greatly reduce a person’s health and quality of life.

ME has historically been described and named in inconsistent ways. Currently, there is no agreed Irish guideline for diagnosing, treating, or managing ME, and approaches vary worldwide.

In 2025, Ireland’s Health Service Executive (HSE) received funding to create the first HSE National Clinical Guideline for ME.

The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.
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Adam @abrokenbattery.bsky.social · 11/09/2026
Today marks 25 years since 9/11. 8 months after the attack, psychiatrist Simon Wessely argued that illness reported around Ground Zero was being wrongly attributed to environmental toxins, suggesting “World Trade Centre Syndrome” was driven by social and psychological factors.
Screenshot from the article
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ME/CFS Science @mecfsscience.org · 05/09/2026
10) Interestingly I found no coloc match for the regions around the genes DCC (PP.H3 = 80%) and OLFM4 (PP.H3 = 85%). I've posted the full analysis (including my attempt at SuSiE-coloc that allows for multiple causal variants) here: s4me.info/threads/th...
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Femi @femi-oluwole.bsky.social · 06/09/2026
Robert Jenrick defends beating women who speak out of turn. #ReformUK the protectors of women!
youtu.be
Robert Jenrick defends beating woman at Reform UK Conference
YouTube video by Femi - F Politics!
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Long Covid Advocacy @longcovidadvoc.com · 06/09/2026
Our statement in response to The Telegraph article: 'How having a disability became cool' Young women, named 'sickfluencers', are turning chronic illness into a lifestyle trend & entrenching a culture of economic inactivity.' by Poppy Coburn, featuring Suzanne O'Sullivan. #longcovid #pwME #POTS
It is disheartening & predictable to see Suzanne O’Sullivan once again given a platform to promote psychosomatic explanations for chronic illness — this time in a Telegraph article attacking disabled people as influenced by social media, identity and attention.

There is a fundamental problem with this framework: it creates a self-reinforcing evidential trap. If patients accept a psychosomatic explanation, it confirms the theory.

If they reject it, their distress is interpreted as evidence that they are psychologically invested in being ill.

If they seek support from other patients, that's “social reinforcement”.
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Lizzy @hopefullizzy.bsky.social · 25/08/2026
So when I thought that there were no words that existed to describe the unique ‘exhaustion’ M.E in everyday life… turns out I was wrong. Here it is: #MECFS #myalgicencephalomyelitis #severeme
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sarah boothby @swastrosarah.bsky.social · 19/10/2025
Before Maeve became too unwell to eat I was working up a research project with Dr Siobhan O’Dwyer which we recruited Dr Nina Muirhead to join. We wrote a rapid response to the BMJ's reporting on government’s Plan for ME. They asked us to rewrite it as a letter so www.bmj.com/content/378/... 1/3
bmj.com
Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS
The recent publication of an all party parliamentary group report,12 a National Institute for Health and Care Exellence guideline,3 and new research priorities4 heralds a dramatic shift in approaches ...
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David Turner @profdavidturner.bsky.social · 05/08/2026
'Disability history largely remains a missing part of the UK's story. Understanding it helps explain why contemporary debates often feel so fraught' New article by me in The Conversation theconversation.com/todays-argum...
theconversation.com
Today’s arguments about disability benefits have been raging for 500 years
From Tudor welfare claims to modern PIP assessments, disabled people have long faced suspicion and bureaucracy.
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Russ Jones @russincheshire.bsky.social · 27/07/2026
Joseph Fourier described the greenhouse effect in 1824. That's 202 years of denial. And suddenly, the Telegraph has decided science is right after all. www.telegraph.co.uk/news/2026/07...
Climate change is real – and the Right needs to get serious about it
The evidence is stacking up – we only have to look out of our windows
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George Monbiot @georgemonbiot.bsky.social · 20/07/2026
Coming over here, winning the World Cup ...
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Quiet Majority @majorityquiet.bsky.social · 14/07/2026
This is quite something. Kingmaker Murdoch has dumped him. Cheery news, yes; but the Elephant in the Room is WHO THE HELL have they now got their eye on? We need to watch like hawks. Full text: "Farage Farrago" This is a long thread of 19 posts, but covers the content, definitely worth a read.
Screenshot of the Farage article in the Times
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Eliana @otrodia.bsky.social · 13/07/2026
If you are going to dream, go BIG! bsky.app/profile/mich...
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 14/07/2026
I am definitely supporting them against cheaty Argentina but not against France or Spain.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 28/06/2026
Labour has turned masses of longterm sick and disabled people against voting for them, through the cuts of £47 pw for new claimants, the proposed 4-point rule for PIP, & the mass of other cuts which are going through the Timms review. Increasing the precarity of people's lives isn't a vote winner
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Mike Galsworthy @mikegalsworthy.bsky.social · 27/06/2026
As Britain swelters through another heatwave, few people will have heard that ministers have quietly dropped plans for solar carports. Cars cooler in summer. Shelter from the rain in winter. Clean electricity all year round. A missed opportunity?
eastangliabylines.co.uk
As Britain bakes, ministers quietly park plans for solar carports
Ministers have quietly shelved plans that could have transformed Britain's biggest car parks into shaded power stations
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Katy B @katybrc.bsky.social · 12/06/2026
"What we've done is to present an objective scientific result showing that there is an average genetic difference between #pwME & others This has changed perceptions & now I believe that most people understand & accept the symptoms as real"@cgatist.bsky.social scienceillustrated.com/health/peopl...
scienceillustrated.com
People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
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Frances Ryan @francesryan.bsky.social · 15/06/2026
The DWP’s own guidance says disabled people with lifelong and progressive conditions should not be reassessed more than once a decade – but the data shows these rules aren’t being followed. “Each time I have less fight left. They take lumps out of you,” Steve, who has a brain injury, told me.
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Elke Hausmann @drelke.bsky.social · 15/06/2026
I'm a doctor joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC #LongCovid #ME
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Eleanor Fielding @meownersclub.bsky.social · 15/06/2026
In a world where our favourite animals have more sense than some doctors…
This Week in Disbelief

A woman is lying collapsed in a gym. She is very grey

Wise Cat is asking “What happened here then?”

Mousiest is replying “The BPS Model... it’s ALWAYS the BPS Model!”

The cartoon maker is. #Fanning TheFlames
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Tom Kindlon @tomkindlon.bsky.social · 14/06/2026
ME Research UK: "There are currently no plans to develop a separate specification for severe and very severe ME/CFS." Government rejects developing a NHS England-wide template service specification revealed in parliamentary answer. tinyurl.com/efww9ntj #mecfs #pwme #severeme #verysevereme
Drawing of a single bed room
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ME/CFS Science @mecfsscience.org · 14/06/2026
1) Watched this presentation by Dr. Steve Gardner from PrecisionLife. Their genetic analysis suggests that ME/CFS is highly polygenic and heterogeneous. They are using their data to make drug repurposing trials more effective, for example on GLP-1 receptor agonists.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 04/06/2026
Very sad to hear of Marjane Satrapi's death.
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Anil van der Zee @anilvanderzee.bsky.social · 04/06/2026
WHO Europe Director Dr. Hans Kluge said at this year’s Invest in ME conference: “ME is a severe multisystem physical disease!”. www.instagram.com/reel/DZKJrvs... #pwme #myalgicE #millionsmissing
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ME/CFS Science @mecfsscience.org · 24/02/2026
5) The BACME model and clinical care is still based on the same idea of rehabilitation as 30 years ago, only with the worst parts about GET and deconditioning cut out. And it's being justified by a unfounded dysregulation model. ME/CFS patients deserve better than this.
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Elke Hausmann @drelke.bsky.social · 24/02/2026
Brain retraining has done nothing for this woman‘s ME/CFS. How she could come to the conclusion that brain retraining is not nonsense, I don’t even understand from that article. What does she think it has done for her relapsing and remitting condition?? #ME www.theguardian.com/society/2026...
In other words, I haven't produced the triumphant recovery narrative I'd intended, but nor is this some bitter exposé of the charlatanism of brain retraining. Brain retraining wasn't miraculous, as I'd longed for it to be; and it also wasn't the nonsense that in my grief and disappointment I've wanted to denounce it as being. There would have been a kind of comfort in either conclusion.
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Karen (yes, yes, I know 😈) @karkin64.bsky.social · 13/02/2026
Seen on the door of a house in Gorton🤣🤣🤣🤣
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 30/01/2026
The report also looks at other forms of discrimination but there is nothing about disabled people. Disabled people are talked about w/o having a voice especially about benefit cuts where abled journalists actively push for cuts w/o opposing voices appearing
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ME/CFS Science @mecfsscience.org · 29/12/2025
1) This year, there were reports of 7 autopsies of ME/CFS patients, showing a dramatic reduction in CRH-producing neurons. This info was shared at the IACFS/ME conference, but the results still haven’t been published yet. Similar findings have been found in type 1 narcolepsy.
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ME/CFS Research Foundation @mecfsresearch.bsky.social · 22/12/2025
We support another Charité Berlin​​ biomarker project: fMRI analyses of brain changes in #mecfs (65 patients + 65 matched controls). Goal: more objective diagnosis & treatment monitoring. Start in January 🔗 mecfs-research.org/en/researchfundi…
Das Bild zeigt das Logo der ME/CFS Research Foundation und den Hinweis, dass ab Januar 2026 ein neues Forschungsprojekt zur Entwicklung von Biomarkern für ME/CFS unterstützt wird.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 15/12/2025
Fascism always seems to be very aging.
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Tom Kindlon @tomkindlon.bsky.social · 03/12/2025
On International Day of People with #Disabilities, please note some disabilities are invisible #Disability #invisibleillness #disabled #disabledpeople #IDPD #IDPD2025 #IDPD25
5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not.

Text:
some disabilities look like this
some like this
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 03/12/2025
Better late than never. #CleanTheAir
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Adam @abrokenbattery.bsky.social · 20/11/2025
Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?
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Alice Roberts @profaliceroberts.bsky.social · 17/11/2025
Really good to hear Stella Creasy on @newsagents.bsky.social saying students should be removed from immigration figures. Of course they should! And they make up a huge chunk of the figures - around half. They’re part of the success story of global Britain - coming here to get a great education.
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Best for Britain @bestforbritain.org · 10/11/2025
SUPERB and angrily unvarnished response, by former BBC chairman, Lord Patten. "I don't think that we should allow ourselves to be bullied into thinking that the BBC is only any good, if it reflects the prejudice of the last person who shouted at it." ~AA
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Adam @abrokenbattery.bsky.social · 06/11/2025
‘If you’re disabled, you’re not ill.’ Sir Charlie Mayfield (author of the Keep Britain Working review) This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics. I’m disabled because I’m chronically ill with #MECFS.
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Adam @abrokenbattery.bsky.social · 06/11/2025
He also champions the ‘biopsychosocial’ model - which has been discredited for ME/CFS and removed from NICE guidelines after causing harm. Using this to shape work/welfare policy risks repeating the same devastating mistakes.
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tornandfrayed.bsky.social @tornandfrayed.bsky.social · 03/11/2025
This case shows why the police shouldn't be releasing information precipitously. As well as the perpetrator an innocent man was mistakenly arrested. If they had their way his name & picture would be all over the press despite doing nothing wrong.
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David Tuller @davetuller1.bsky.social · 23/10/2025
For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link: crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
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Sunder Katwala (sundersays) @sundersays.bsky.social · 23/10/2025
Stephen Bush on the extraordinary draft legislation which Shadow Home Secretary Chris Philp, Matt Vickers, Katie Lam and backbench colleagues have proposed in parliament It is a proposal that would seek to deport around 5% of the resident population, including over a quarter of a million with ILR
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