Living and working full-time from bed with ME/CFS. Honest posts on chronic illness, disability rights and the UK systems that are meant to help.
United Kingdom
Joined September 2020
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Disabled people are currently the softest target in British politics: no lobby, no union, no headlines when we lose. So the press manufactures the scrounger myth, ministers repeat it on cue, and the benefits keeping us alive get stripped, all while the public cheers the cuts.
The ME Association estimates up to 1.35 million people in the UK could have ME/CFS, and there’s still no cure or licensed treatment. @andyburnham, if the government wants to bring down the welfare bill, fund the research that could give people their lives back. #MECFS
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Things a doctor shouldn't say to someone with ME/CFS:
"Just exercise more."
"Push through and you'll feel better."
"It's just deconditioning."
Since 2021, NICE NG206 has said don't tell people with ME/CFS to exercise more, as it may worsen symptoms.
TheNappingSloth ♿🏳️🌈 retweeted
Just to be clear, two men now control Reform UK.
One who lives in Thailand, one who until a split second ago lived in Hong Kong.
These aren’t your friends, neighbours and work colleagues.
Another £36 million today.
That's £72 million in 24 hours for our fighting fund.
Only @reformparty_uk will take our country back !
gbnews.com/politics/reform-u…
TheNappingSloth ♿🏳️🌈 retweeted
The billionaire owned media would hate for you to share this apology....
This quoted post is unavailable.
Turns out this tweet triggered all the "right" people.
This weekend, hundreds of grown men in balaclavas tried to physically stop an RNLI lifeboat from bringing vulnerable people to shore. Then they blocked the buses too. Masked men, deciding who's allowed to survive.
The RNLI didn't ask who was in the water. They never have, not since 1824.
If pointing that out makes me your villain, I'll take it. Small mercy: while you're busy raging in my replies, that's a few minutes you're not spending trying to dig up a volunteer's address on someone else's post.
Retweet if saving a stranger from drowning should never need a debate. Drop a comment telling me why you care about lives being saved.
Back the people who actually save them: rnli.org/support-us/give-mon…
Sunday night in Portsmouth, hundreds of men in balaclavas tried to physically stop an RNLI lifeboat bringing shipwrecked people to shore. When that failed, they blocked the buses taking them to processing instead.
The Home Office called it thuggish and intimidating. Even Nigel Farage said he "deplores" grown men hiding their faces to intimidate people on Britain's streets.
So here's who these volunteers actually are:
Last year alone, RNLI crews launched over 9,000 times and saved 272 lives. Migrant Channel rescues have consistently made up around 1% of RNLI launches in recent years. The other 99%? Swimmers, sailors, kids cut off by the tide. People exactly like the ones a masked mob just tried to stop from reaching dry land.
An RNLI crew doesn't ask who's in the water before they go in after them. They never have, not since 1824.
Blocking a lifeboat with a mob in balaclavas doesn't stop a crossing. It just risks someone drowning while masked men decide who gets to survive.
Retweet if a mob should never get to choose who lives.
Reply if you've got an RNLI story of your own. Unless you're here to recycle the "taxi service for migrants" line, in which case save your thumbs the effort, the numbers above already buried it.
TheNappingSloth ♿🏳️🌈 retweeted
The work you do is extraordinary, and you absolutely do not deserve the hostility some are throwing your way. Volunteering to save lives is one of the most selfless and noble things anyone can do. Thank you for being there when it matters most.
Sunday night in Portsmouth, hundreds of men in balaclavas tried to physically stop an RNLI lifeboat bringing shipwrecked people to shore. When that failed, they blocked the buses taking them to processing instead.
The Home Office called it thuggish and intimidating. Even Nigel Farage said he "deplores" grown men hiding their faces to intimidate people on Britain's streets.
So here's who these volunteers actually are:
Last year alone, RNLI crews launched over 9,000 times and saved 272 lives. Migrant Channel rescues have consistently made up around 1% of RNLI launches in recent years. The other 99%? Swimmers, sailors, kids cut off by the tide. People exactly like the ones a masked mob just tried to stop from reaching dry land.
An RNLI crew doesn't ask who's in the water before they go in after them. They never have, not since 1824.
Blocking a lifeboat with a mob in balaclavas doesn't stop a crossing. It just risks someone drowning while masked men decide who gets to survive.
Retweet if a mob should never get to choose who lives.
Reply if you've got an RNLI story of your own. Unless you're here to recycle the "taxi service for migrants" line, in which case save your thumbs the effort, the numbers above already buried it.
These volunteers get out of bed at 3am, unpaid, to go out in a storm for a total stranger. All it takes from the rest of us is helping fund the kit, fuel and training that gets them there safely.
Whatever you're able to give today, big or small, keeps the next lifeboat launched. It could be someone you know or love who needs them next.
Please donate to @RNLI: rnli.org/support-us/give-mon…
Thank you for backing the people who never stop to ask who's worth saving.
The Telegraph's "sickfluencer" piece mocks disabled people for daring to talk about their own conditions online.
Ableism, plain and simple.
Not every disability comes with a wheelchair, a stick, or a badge. Invisible disabilities are real, and mocking people because you can't see their condition is the exact ignorance our community fights every day.
When disabled people see others like them thriving online, that's hope. It shows a life worth living is possible, not a performance for a journalist's amusement.
A national newspaper shouldn't get a free pass for this. The Telegraph needs proper editorial standards, and IPSO needs to start treating ableist rhetoric the way it treats other forms of hate.
If you live with an invisible disability, drop your worst "but you don't look sick" line below. Let's show the Telegraph exactly how many of us there are.
Please also share this to reach as many people as we can!
'A cohort of young people – somewhat cruelly dubbed “sickfluencers” – want to tell you about their conditions and convince you they are real.
'But, were they not decked out in the accessories of their disease, it would be impossible to perceive the conditions they consider to be so central to their interaction with the world' ⤵️
telegraph.co.uk/news/2026/09…
Sign this, please.
The past few weeks have put a name to something disabled people have been describing for years. Scope's own research backs it up: three in four disabled people have experienced negative attitudes or behaviour in the last five years, a quarter have been accused outright of faking their own disability, and 87% say it negatively affects their daily lives, including more than a third who've avoided even applying for work or a promotion because of it.
That pattern builds up over years of coverage that treats our support, our benefits, and our right to simply exist as we are, as a topic with two legitimate sides worth debating.
This petition is aimed at that pattern itself: a demand that the format stop treating disabled people's lives as acceptable material for a debate segment, whatever anyone thinks of any individual presenter.
Sign it. Share it. If any of this sounds familiar, you're not imagining it, and you're not alone.
c.org/kwKRsfTkh2
Here it is folks!
Axe the Jeremy Vine Show for pushing negative narratives against disabled people.
I need 5 signatures to get this started. Please help!
Sign the Petition! c.org/BmTKsSSM6Y via @UKChange
A few days ago, I wrote that Jeremy Vine has a simple path: apologise on air, challenge ableist rhetoric with the same energy he gives everything else, put disabled people on the panel when the story is us, and cover our unheard stories. Do that, and the kinder, private Jeremy his friends describe becomes real for everyone else too.
Instead, he has dismissed the disabled people and carers responding to him as a "pile-on" and released a glossy, produced video attempting to defend his show's balance.
Read that back. His answer to "you talk over disabled people" was to talk over disabled people.
Lived experience is met with a production package. Requests to listen are met with victimhood. A man with a national TV show would like you to believe he is the one being silenced.
He had the chance to prove his friends right. What he's shown is the second point of my original post: people are remarkably comfortable talking over disabled people and dismissing our experiences. It turns out that appears to include him.
The path forward hasn't moved, but it's definitely got a lot longer. It still starts with an on-air apology, and it needs no debate segment, no guest booking, and no permission from anyone but Jeremy. Disabled people have already told him everything he needs to hear. The only step left is listening.
One more thing, and I mean it: none of this should ever tip into direct harassment of the human. Criticism of a broadcast record, on-air/online personality, or the whole show, is fair. Harassment of a human being, is not.
It's fascinating how the people closest to Jeremy Vine are all coming out in his defence. That tells us two things:
1) He is apparently a *completely* different person in private than the one disabled people see on his show.
2) People are remarkably comfortable talking over disabled people and dismissing our experiences.
The uproar from the disabled community didn't come from nowhere. His show's account asked, in his name, whether it was "time to crack down" on benefits for sick and disabled people, and whether young disabled people should be called the "sick-note generation". He told his own panel there is something "fishy" behind the rise in people too ill to work, and recounted replying to someone who had just been diagnosed with ADHD with "we haven't got any money". Telling us you know a kinder man in private doesn't undo any of that. We don't watch him in private; we watch the show, and see it's posts.
Yes, we know he hosts a talk show, and debate is the format. A host can still correct disinformation and push back on ableist rhetoric. Good hosting includes both.
This situation could still end well, and the power to make that happen sits entirely with him. If the private Jeremy is real, here is what he could do with one of the biggest daytime platforms in Britain:
Apologise properly: Do it in his own voice, on his own show, for the specific things said in his name. A deleted tweet is a shrug, but an on-air apology is a statement.
Challenge the rhetoric: Bring the same energy he brings to everything else. When a guest claims welfare is "out of control," push back with the actual figures. He does it on other topics, so he should do it on ours.
Include us: Put disabled people on the panel when the topic is us. Nothing about us without us.
Cover unheard stories: Highlight carers in poverty and people losing the support they depend on. Show the human cost behind the statistics his show debates so casually.
That is the whole ask. Nobody wants him hounded, and nobody is demanding he disappear. The ask is to be heard instead of talked over, and he is in a better position than almost anyone in British broadcasting to show what listening looks like.
It's fascinating how the people closest to Jeremy Vine are all coming out in his defence. That tells us two things:
1) He is apparently a *completely* different person in private than the one disabled people see on his show.
2) People are remarkably comfortable talking over disabled people and dismissing our experiences.
The uproar from the disabled community didn't come from nowhere. His show's account asked, in his name, whether it was "time to crack down" on benefits for sick and disabled people, and whether young disabled people should be called the "sick-note generation". He told his own panel there is something "fishy" behind the rise in people too ill to work, and recounted replying to someone who had just been diagnosed with ADHD with "we haven't got any money". Telling us you know a kinder man in private doesn't undo any of that. We don't watch him in private; we watch the show, and see it's posts.
Yes, we know he hosts a talk show, and debate is the format. A host can still correct disinformation and push back on ableist rhetoric. Good hosting includes both.
This situation could still end well, and the power to make that happen sits entirely with him. If the private Jeremy is real, here is what he could do with one of the biggest daytime platforms in Britain:
Apologise properly: Do it in his own voice, on his own show, for the specific things said in his name. A deleted tweet is a shrug, but an on-air apology is a statement.
Challenge the rhetoric: Bring the same energy he brings to everything else. When a guest claims welfare is "out of control," push back with the actual figures. He does it on other topics, so he should do it on ours.
Include us: Put disabled people on the panel when the topic is us. Nothing about us without us.
Cover unheard stories: Highlight carers in poverty and people losing the support they depend on. Show the human cost behind the statistics his show debates so casually.
That is the whole ask. Nobody wants him hounded, and nobody is demanding he disappear. The ask is to be heard instead of talked over, and he is in a better position than almost anyone in British broadcasting to show what listening looks like.
TheNappingSloth ♿🏳️🌈 retweeted
Doesn't surprise me to find that luvvies & fellow journalists are circling their wagons around #JeremyVine regarding the Carers UK tone deaf choice as him as a presenter for their awards. Overtalking disabled & carers voices & in the case of Narinder Kaur, othering us.
A diagnosis I've had confirmed for over a year has quietly disappeared from my NHS record.
No letter. No explanation. I only found out because I needed it for something else and it wasn't there.
When I asked why, I was told a rheumatology report was being treated as the deciding factor against it. That appointment wasn't even about the diagnosis, it was for something unrelated.
In the same report: a pain score was logged wrong (now corrected), and I was told to work with a personal trainer on "deconditioning."
I have ME/CFS. Graded exercise approaches were pulled from NICE guidance in 2021 because they can cause serious, lasting harm through post-exertional malaise. That guidance had existed for nearly three years by the time this letter was written.
So a diagnosis confirmed by two separate specialists, backed by clear bloods and ongoing symptoms with no other explanation, is being overridden by a report built on a data error and an exercise plan current guidance says shouldn't be recommended to people like me at all.
Meanwhile I'm the one expected to chase this down, unpicking my own record by hand, while dealing with the fallout of just trying to get someone to look at it properly.
If you've had a diagnosis quietly dropped, or a single flawed report used to override years of evidence, I'd like to hear it. This isn't rare, and it should be.
Jeremy Vine doesn't debate disability rights, he undermines them. His own show has asked whether sick and disabled people deserve support at all, and he tells his panel "you've got to slash benefits" himself. Platforming him isn't neutral. It's hostile.
Go through the replies on this. There's a somewhat significant portion of people that have, literally, no idea of how the benefits system works, especially for disabled people.
Those same people think they're now experts, and think they have a right to tell disabled people what to do with their lives.
The 24/7 free bus pass change for disabled people is a welcome step. As a disabled person I'm grateful for anything that's not demonising us, and it's a real step forwards. But eligibility only matters if there's a bus to catch.
My village bus runs once an hour. Without starting the argument about buggies; if the wheelchair space is already taken when it arrives, that's another hour's wait. Sometimes more if the next one's full too. Extending the hours doesn't add a single extra bus to the timetable.
Real access needs investment in service frequency and accessible bus stock, not just a change to when the pass works. Policy announcements like this look great in a press release and change almost nothing on the ground.
The reaction under the post today said more than the policy itself. Wall to wall ableism, barely any pushback. So genuine question: is the UK public still capable of being ashamed of how it treats disabled people, or have we given up on that too?
TheNappingSloth ♿🏳️🌈 retweeted
Disabled people are currently the softest target in British politics: no lobby, no union, no headlines when we lose. So the press manufactures the scrounger myth, ministers repeat it on cue, and the benefits keeping us alive get stripped, all while the public cheers the cuts.