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Sleepy Amy

@sleepyamy.bsky.social
583 followers 517 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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Reposted by Sleepy Amy
Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 05/10/2026
It can still disable you. Forever. People had a hard time when restaurants closed for a few weeks. It was seemingly the worst thing that had ever happened to them. Imagine being so sick that you have to stay home for five years. And you're still sick, and there's no treatment, there's no cure. 😷
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Sleepy Amy @sleepyamy.bsky.social · 02/10/2026
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 · 02/10/2026
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 · 02/10/2026
Tell me again how we should all have hope because he said some stuff at the conference that made people cheer and go all misty eyed, and how everything's going to be all right now* *except if you have the nerve to become ill or disabled before you've done enough capitalism
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Sleepy Amy @sleepyamy.bsky.social · 02/10/2026
Looks like he's doing a twofer on wrecking young disabled people's lives bsky.app/profile/theg...
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Sleepy Amy @sleepyamy.bsky.social · 02/10/2026
How is it a NATIONAL Care Service if it doesn't apply to everyone in the nation?
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Sleepy Amy @sleepyamy.bsky.social · 02/10/2026
Fucks sake
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Lynne #TaxTheRich #WelfareNotWarfare. Eco-Socialist. Pro-🇵🇸 @bebsdotteragain.bsky.social · 02/10/2026
🤔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 · 02/10/2026
😇 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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Sleepy Amy @sleepyamy.bsky.social · 30/09/2026
Yes. And usually can't sleep that night regardless of how it went. A GP recently commented that I 'seemed stressed' in the appt and I wanted to say 'Well you would "seem" stressed too if most times you reached out for help you received harm instead,' but I just denied it ofc.
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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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Sleepy Amy @sleepyamy.bsky.social · 23/09/2026
Thank you! Yours is awesome. I hope MPs are sweating over their inboxes today
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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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Sleepy Amy @sleepyamy.bsky.social · 23/09/2026
I gave it a go. The brain fog fought me but I managed something a bit more than 'grow a spine pls'
Dear Fabian Hamilton, 

I'm writing to ask you to speak in Parliament on behalf of your constituents who are horrified, as I am, by the rise of the far right in this country. 

You will no doubt be aware of the recent incident in the Channel where a far right thug filmed himself slashing a boat with RNLI rescuers still aboard, and the escalating number of aggressive demonstrations including one where a child was given a megaphone to shout 'let them drown'. 

If this was not worrying enough, the soft soaping of right wing groups by the UK media and constant framing of hate as 'legitimate concerns' is allowing this to grow largely unchecked. 

After the recent ridiculous display of racism in Piddington, Lisa Nandy said that the Labour Party was 'listening'. But appeasement of the far right never works. This year's local election results bear this out.The Labour Government needs to urgently address this crisis and stop accepting the arguments and framing of the right wing press, Reform and Farage. The new PM Andy Burnham must take action on several fronts but perhaps the first step could be to consign the phrase 'legitimate concerns' to the bin and start calling this what it is: racism and hate. 

Please speak up in Parliament and demand that this government step up and provide a counter narrative to the endless hate and fear mongering that is enabling more and more aggression, violence and intimidation. Please demand a change in messaging that emphasises human rights and dignity, and that refuses to entertain hate. It was not so long ago that people were horrified at the appearance of BNP leader Nick Griffin on Question Time; these days he would be on every week and nobody would bat an eye.


Yours sincerely,
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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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Sleepy Amy @sleepyamy.bsky.social · 23/09/2026
I had a big drop in baseline few weeks after my 4th Covid vax. I also don't know if it was correlation or causation. It's been a really heavy decision not to have any more and I still don't know if I'm doing the right thing.
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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 · 22/09/2026
I just had to look it up (of course) and in the verses you've got quite a few plus right at the end apparently they say 'Are you enjoying yourselves? Yeah!'
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Sleepy Amy @sleepyamy.bsky.social · 22/09/2026
The only ones I can think of are the colours, plus 'screw back' - none of which would be pointless I assume!
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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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Sleepy Amy @sleepyamy.bsky.social · 18/09/2026
Drowning in the sea to own the wokerati
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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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Sleepy Amy @sleepyamy.bsky.social · 18/09/2026
'If we stop doing digital updates then the product dies by itself' yep this is my 11 year old laptop which still works perfectly but that can't be upgraded to the latest OS bc of this exact arbitrary crap, so it can't run latest versions of software. I'm keeping it alive for now!
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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
Bit of background: bsky.app/profile/slee...
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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
Since becoming chronically ill I can't watch medical shows anymore, too triggering and the difference between them and real life is too jarring. When I first became ill House was one of the most popular and probably remains the most fantastical 🙃
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
Thank you. Tbh though I'm mentally and emotionally drained from researching and suggesting, rinse and repeat. I've taken a long time to find ideas, because I'm so fatigued. And I'm sure there's stuff I've missed. I'd love a doctor to proactively suggest something (an impossible dream?).
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
This has been the pattern for the whole of the last 2 years though. I've suggested things based on my own research which I can't do every day or even most days. And it depends on me stumbling across the right thing online. Anyway I hope I don't have it bc surgery. But I do need an answer.
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
However when I mentioned it to my POTS cardiologist he knew immediately what I was talking about and referred me to his colleague in vascular. But I had to specifically say 'what about MALS' first, just describing my symptoms didn't cause him to suggest it.
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
'Get CCI sorted' ahahaha omg 🤪 I actually only heard of MALS this year and that was via a document from the Bateman Horne Center on ME/CFS and comorbidties to look out for. I don't recall it being mentioned in anything I've read from the UK EDS / hypermobility charities.
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
Funny you should say that. I spoke to a vascular specialist last month and asked if I could have MALS. He is going to look into how I could be tested locally as I'm not really able to travel (he's based in London).
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
The only abnormal test result so far has been calprotectin. And one doctor described this as 'reassuring' (????) but another has said 'hmm we probably can't ignore that'. So they're investigating further but I'm dragging myself along by my fingertips at this point. I'm exhausted.
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Sleepy Amy @sleepyamy.bsky.social · 15/09/2026
I must have said the words 'tight band' to at least a dozen different doctors. It feels like a fever dream mixed with Groundhog Day. At all points I've had to come up with suggestions and theories because the doctors themselves weren't doing it.
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