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Sleepy Amy

@sleepyamy.bsky.social
580 followers 515 following 865 posts

Pile of poor coping mechanisms in a malfunctioning meatsack. POTS, EDS, probable ME/CFS and more 🙃 Nature lover, bird watcher, politically left. @amy_is_tired on The Other Place. Mask up! 😷 For my music, follow @amyclaromusic.bsky.social

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Sleepy Amy @sleepyamy.bsky.social · 4h
If you ❤ 80s music or know someone who does, Justin's book will be a good choice for you. It's divided into easily digestible nuggets and full of cool facts. Impress your friends or just be like 'oh I didn't know that' to yourself. 🤓 🎹 💿 🎶
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Frances Ryan @francesryan.bsky.social · 9h
Disability doesn’t care how old you are. Specialist food is no cheaper if you’re 19. Employers don’t lose their prejudice if you’re 21. This is blatant intergenerational inequality from Labour. Younger disabled people of all severities deserve better. www.theguardian.com/politics/202...
theguardian.com
Key disability benefit for young people may be axed under major welfare changes
Exclusive: Plan under discussion involves intensive support to help young people into employment
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Sleepy Amy @sleepyamy.bsky.social · 6h
Fucks sake
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Lynne #TaxTheRich #WelfareNotWarfare. Eco-Socialist. Pro-🇵🇸 @bebsdotteragain.bsky.social · 7h
🤔Quick survey (England Only); Who do you support the Green Party or Labour? Green Party… press Repost Labour Party… press Like
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Action for ME @actionforme.bsky.social · 6h
😇 Our Christmas Angels project is back! This heartwarming project enables people with ME to send Christmas cards to each other via Action for ME. Register & find out more info here 👇 www.actionforme.org.uk/our-christma...
Graphic from Action for ME promoting their Christmas Angels project. Photo of two ceramic angels on some snow with festive lights behind. Text beneath talks about the project with a quote from a past participant. Action for ME logo in top left.
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sarah boothby @swastrosarah.bsky.social · 30/09/2026
justice4me.uk Please support lawyers to challenge this injustice, on behalf of everyone with #ME and #LongCovidME, regardless of disease severity.
justice4me.uk
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Hannah Vardit @hannahvardit.bsky.social · 29/09/2026
i worry that men think being A Good Guy is dramatically and heroically intervening on behalf of an endangered woman and then being publicly rewarded on a grand scale when actually being A Good Guy is just usually saying, “hey man that’s not funny” or “wow that’s fucked up” and there is no reward
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Adam @abrokenbattery.bsky.social · 29/09/2026
“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.
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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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kate @bookhaven.bsky.social · 23/09/2026
#NEISvoid What papers/resources have you found most helpful for onboarding new doctors in a hospital visit? Surgical considerations would also be helpful (ex: anesthesia asks) I'm making up a hospital packet in case of emergency/low functioning admission 🙏 Dx list 👇 #MECFS #hEDS #POTS #MCAS
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Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
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chiller @chiller.eurosky.social · 23/09/2026
Might have done a bit of a rant at my MP. It's quite a nice feeling actually. Give it a go.
Dear Ms Dollimore,

The recent behaviour of a mob of organised men committing acts of public disorder, crimes, inciting racist violence, and yesterday actually slashing a rubber dinghy in the Channel with two RNLI rescuers still aboard it, needs urgent, visible action from our government, and from the police.

If Palestine Action can be proscribed as a terrorist group for causing property damage, then this gang of thugs has already gone much further. Local news in Gosport (link to the story provided below my signature), reports that a child in just such a mob was singing "let them drown" over a megaphone there, yesterday.

RNLI staff are suffering horrific harassment and assaults, and in some areas no longer feel they can work at all, which endangers everyone at sea. Our ports have been vandalised at Portsmouth and Dover.

Enough is enough. We either take action, or we cede this once inclusive, secular country to the hands of a narrow group of men, the leaders of which claim to be Christian (it is no brand of Christianity I recognise), who want this island to be only for white, violent, straight men in balaclavas to do with as they see fit. This isn't a British ethos: this is the ethos of every Russian mercenary. It has been promoted and pushed and egged and funded and nurtured by social media, where the racism, the hate. the disdain for our country's values is open and constant - and which remains unregulated to the cost of us all; and by the British media, also entirely unregulated (I suppose we could crowd fund some dentures for Ofcom but I remain unconvinced that it would know what to do with them), including those parts of it which are most trusted by the British public (link to BBC article below, where the thugs are referred to as if they are ordinary protesters, and a life-threatening criminal act in the channel aqainst RNLI staff is relegated to a brief mention in paragraph 15).

We used to hear "both sides" from the news. and even then, that was an absurd position, where only one side ever provided facts, and the other only ever provided feelings. We don't hear that any more. Now we only hear one side. it is the racist. hateful side. and it is framed, always, as "legitimate concerns".

They are not legitimate. We saw no village-wide protest from Piddington, when they had 2,600 mostly white young men in those barracks, and endured crimes, including rape, associated with those men. But 1200 brown men? Suddenly that's "legitimate concerns". It isn't. It's racism.We cannot predicate the human rights of a person upon the strong feelings of a group that hates them.

That is not how human rights work ir this country, or it didn't used to be. We have done precisely this to trans people in this country - handed their harmless lives directly to the tiny, well- connected, well-funded group that hates them most. We are now normalising racism in precisely the same way. This is going to destroy our society.

What we need from the government urgently is:-
• Press regulation, sharp-eared enough to identify a dogwhistle and bold enough to call it what it is: with the good of our inclusive society at it's core and meaningful punishments
• Social media regulation: frankly X should be shut down. and the embarrassing fact that we don't want to annoy the chief nazi because he owns Starlink needs to be faced, because X's continued influence or our society must end. Facebook isn't much better: regulate them or end them.• We need clear, unequivocal statements from our PM. and from our MPs, about the fact that this is racism and terrorism. It is not "legitimate concerns".
• We need these Blackshirts and their leaders proscribed as terrorists, and sentenced accordingly
• And we need a concerted public information campaign to offset the colossal, constant untruths the press and social media have propagated: our society has hardly any crime. Refugees aren't disproportionately criminal. And tell people what benefits refugees get because it's shockingly low and people believe utter nonsense they read on Facebook. Educate people! We used to have incredibly effective public information films on prime time TV - I'm old enough to remember when drink driving went from "a bit of a laugh, ho ho ho evervone does it," to "nobody does that now" virtually overniqht, because of such a campaign.

I realise government is hard, and that our current qovernment is tasked with undoing 20 years of utter incompetence. But that must start from the basis of British values. "Respect and dignity" isn't an idea. It's an action, taken every day, it's the courage to stand up against hate, every day, and to call it what it is and to say the uncomfortable thing and sometimes, yes, the unpopular thing.

I hope that our government has this courage. I have not seen it yet,
Yours faithfully,
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 22/09/2026
#MEcfs folks, they're so close to £23k - still not their stretch target, but close. I've just put in another £250, I can't afford more right now. If you can add a few quid, it all helps. May come to nothing but, personally, I feel better knowing that this work is happening. #SevereME
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Sleepy Amy @sleepyamy.bsky.social · 22/09/2026
Always liked her
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Sleepy Amy @sleepyamy.bsky.social · 22/09/2026
Four days left to go on this www.crowdjustice.com/case/justice...
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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Sleepy Amy @sleepyamy.bsky.social · 21/09/2026
1687 screenshots in my gallery and those are just the uncategorised ones 🙃
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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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Jamie Crawford @jamiecrawford68.bsky.social · 18/09/2026
You might have known someone who went on to develop MECFS or LC. We’re maybe someone you just stopped seeing over time, who dropped out of your social groups, or from work. We go quiet. Say you can’t meet up a few times, and you stop being asked. We’re there, but mostly we’re stuck at home. #MECFS
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Martin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 19/09/2026
Can you spare a £fiver+ ? People with #MEcfs are crowd funding a legal challenge to the NHS for failing to provide care, especially for very severe ME - where patients are still being harmed despite many deaths. Globally countless millions with #LongCovid now meet the diagnostic criteria for ME.
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Sleepy Amy @sleepyamy.bsky.social · 18/09/2026
Piddington just sold out of these
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sarah boothby @swastrosarah.bsky.social · 18/09/2026
www.crowdjustice.com/case/justice... Please share widely #ME/cfs #LongCovidME #HumanRights #NHSReform
crowdjustice.com
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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chiller @chiller.eurosky.social · 18/09/2026
This is so good.
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Jessica Ellis @baddestmamajama.bsky.social · 18/09/2026
People will cut out artificial food dyes, spend hours at the gym, drink vitamin infused water…and then go to the airport and rawdog breathing in an airborne pathogen that can disable you permanenty and is basically guaranteed to be there.
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solomonhughes.bsky.social @solomonhughes.bsky.social · 17/09/2026
Nothing says "lets clean up politics to deal with Reform's super rich donors" like holding a No.10 drinks party for Labour's Ultra High Net Worth donors.
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Andrew Gifford @andrewgiffordphoto.bsky.social · 16/09/2026
Timms review is seeking to narrow/reduce PIP! Important: please complete this survey to help push back on this; benefitsandwork.co.uk/news/tell-us... In my case, PIP needs doubling/tripling as our NHS isn't clinically supporting my disease (ME/CFS).
benefitsandwork.co.uk
Tell us if you support PIP awards based on disability costs
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
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Sleepy Amy @sleepyamy.bsky.social · 16/09/2026
If the idea of PIP being stuff instead of money bothers you, Benefits and Work are running a very short survey where you can have your say: benefitsandwork.co.uk/personal-ind...
benefitsandwork.co.uk
Timms survey
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
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Sleepy Amy @sleepyamy.bsky.social · 16/09/2026
This is such a lovely low effort game, I've played lots on days when brain fog is moderately bad but I need something distracting. And you learn about critters too 🦜
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Janel Comeau 🍁 @verybadllama.bsky.social · 16/09/2026
I mean if you really want to hear Ed Sheeran without any opening acts you can simply get put on hold with your bank
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Adam @abrokenbattery.bsky.social · 16/09/2026
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
It's getting on for two years since this started, and I still don't have an explanation.
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Minestrone Monster @minstronemonster.bsky.social · 14/09/2026
Hello chronic illness pals, has anyone had experience with hypophosphataemia following an iron infusion?
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Sleepy Amy @sleepyamy.bsky.social · 13/09/2026
I'm really not on top of my salt game at all. Trying different methods of increasing since going on fludrocortisone, and all seem to result in stomach upset. How do I get the damn stuff to absorb???
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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 13/09/2026
A couple of weeks ago it was my 3000th day bedridden. I drew this to mark the occasion. It's a long time for both illness-haver and carer #MyalgicEncephalomyelitis #MEcfs #ChronicIllness #DisabledArtists
A three panel one page comic featuring a white woman in a profiling bed in grey blue watercolour and the words 3,000 days in bed with severe myalgic encephalomyelitis. Other colours are brick red and muted orange
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Kelly @broadwaybabyto.bsky.social · 11/09/2026
Anyone can become disabled at any time. It’s not a moral failing. It’s not laziness or a lack of effort. It’s a part of the human condition. People get sick. Bodies break down. It’s a minority group you can join any time.
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chiller @chiller.eurosky.social · 11/09/2026
They haven't put the safeguards in. The safeguards have been well defined. They could easily have put them in. They have chosen not to. If you're pro this bill, I would urge you in the strongest possible terms to stop, and think why. And write to your MP about stopping it.
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Coyote / J. Stryker 🇨🇦 | Memento Vivere 🍃 @easterncoyote.bsky.social · 10/09/2026
Help! My abuser wants to kick me out. We live in the country. No public transportation. Nowhere to go. No photo ID. I’m medically vulnerable. The police took his side. If he wins, I’m dead. I need $50 for phone & internet service. (I’m using his wifi.) PAYPAL: catacaustic77@gmail.com. TY! 💚
Wile E. Coyote holding a small sign that says “HELP!”
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Sleepy Amy @sleepyamy.bsky.social · 10/09/2026
Iridescence 💚 💙 💜 Some lovely colours on the Birds feed today
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Alex Andreou @sturdyalex.bsky.social · 10/09/2026
This German comedy sketch (with English subtitles) perfectly captures so much of what is going on right now in the UK, the US, and across Europe. "Playing the 'Nazi Card' in the Third Reich", by Browser Ballett.
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Sleepy Amy @sleepyamy.bsky.social · 10/09/2026
Is the government aware that money can already be exchanged for goods and services www.theguardian.com/politics/202...
theguardian.com
UK disabled people could swap Pip cash for ‘in kind’ support in benefit overhaul
Claimants could trade part of payment for specialist equipment, services or training under proposal
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Kelly @broadwaybabyto.bsky.social · 09/09/2026
Sharing my 🧵 on Assisted Dying and why many disabled people fear a slippery slope This is based on Canada’s MAiD It’s been “offered” to me when I was clear I wanted treatment My condition wasn’t terminal I don’t oppose the right to die, but we must ensure disabled people have the right to live.
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The Author, Séamas O'Reilly @seamas.bsky.social · 08/09/2026
Have seen this Nature piece about the effects of X's algorithm mentioned again and it bears repeating; exposure to a right wing algorithm makes you - measurably and predictably - more right wing, even after you stop using it. www.nature.com/articles/s41...
nature.com
The political effects of X’s feed algorithm - Nature
Among users initially on a chronological feed, 7 weeks of exposure to X’s algorithmic feed in 2023 shifted political attitudes and account-following behaviour in a more conservative direction compared...
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The Guardian @theguardian.com · 07/09/2026
I had an amazing experience as a disabled person at school in the 70s. Since then, discrimination has got far worse | Mik Scarlet
theguardian.com
I had an amazing experience as a disabled person at school in the 70s. Since then, discrimination has got far worse | Mik Scarlet
Toxic narratives around ‘benefit scrounging’, fed by successive governments, have become embedded in the national psyche, says Mik Scarlet, campaigner and co-CEO of the national charity Phab
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Sleepy Amy @sleepyamy.bsky.social · 06/09/2026
A right barney going on just outside my bedroom window between a large family of magpies and a few crows. Hope it doesn't descend into fisticuffs (beakicuffs?)
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Justin Lewis @whenisbirths.bsky.social · 30/08/2026
We tried our very best with this in terms of marketing but (so far) we still struggled relatively to get it into shops. Do investigate if you haven’t and you’d like to, there is no other music history book quite like this one. #IntoTheGroove
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#MEAction Network @meactnet.bsky.social · 29/08/2026
As we come to the end of Severe ME Awareness month, we want to share so much love to each member of our community - whether you can be online or whether we know your story - we hold you in love. We fight for you. We show up over and over determined to create change. #PwME #SevereME
Night sky filled with stars above silhouetted trees surrounding in a comforting way. Red hearts and text "Sending love yo our community. May you feel that love and know you are valued and worthy." #MEAction logo
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Sleepy Amy @sleepyamy.bsky.social · 29/08/2026
I contributed a message to this project - it's not in any of the listed places but you can read it on their website. An awesome and much needed creative project and well worth your time reading about. Very grateful to Alison for putting it together.
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Sleepy Amy @sleepyamy.bsky.social · 20/08/2026
If you're a chronically ill, bedbound person, it's hard to healthily vent anger if you don't have the usual outlets at your disposal (sport, exercise, loud music, screaming into a pillow, etc etc). When every action has a cost and potentially causes PEM. If this is you, how do you do it?
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Sleepy Amy @sleepyamy.bsky.social · 20/08/2026
One of the many things that bother me about C4's ADHD travesty is where he lies to get a diagnosis and meds, and therefore doesn't that make ADHD diagnosis too easy and therefore suspect etc - and it's that right wing way of thinking that everyone is on the take or trying to lie. See also: benefits.
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Rod McMillan 🍉 🇸🇩 🇺🇦 📚 @morewretchthansage.bsky.social · 15/08/2026
⏩ Gift Article As a #LongCovid carer, and volunteer with @longcovidscot.bsky.social It would be great of more people understood the reality of PEM and fatigue www.theatlantic.com/health/archi...
theatlantic.com
Fatigue Can Shatter a Person
Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.
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The Cosmic Shambles Network @cosmicshambles.com · 19/08/2026
After Channel 4's 'The Great ADHD Myth?' aired last night, we gathered some experts to review just how wrong it got things. @robinince.bsky.social chats to Camilla Pang, @ginarippon.bsky.social, @drdeanburnett.bsky.social & @thepublicturner.bsky.social Full chat on The Incomplete Shambles Podcast.
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