iiinova — where your digital self keeps evolving

lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 04/05/2025

The rise of fascism in the UK isn’t a surprise. It’s because people actually like racist, homphobic, transphobic, eugenic policies. #Fascism

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 27/04/2025

Absolutely heinous! Funny how they can magically find autism testing services when for years young people with autism have been parked on waiting lists, desperate for help. I’m gonna actually throw up with indignation.

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Dr Jay Watts @shrinkatlarge.bsky.social · 26/04/2025

A digital graphic with a light blue background and bold white text. The title reads: “It’s not about illness. It’s about prejudice.” Below, the text explains that bowel cancer rates are soaring in young people due to changes in the environment, but no one accuses them of being suggestible, faking, or attention-seeking. In contrast, when it’s autism, ADHD, or mental health struggles, old slurs return. The graphic concludes that it was never about “too much illness,” but about who society chooses to care for — and who it still chooses to blame. The quote is signed “Dr Jay Watts” with the hashtag “#WelfareNotWarfare.

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Nina Turner @ninaturner.bsky.social · 25/04/2025

The term “skilled labor” is weaponized by the ruling class to divide the working class and separate people into a category where poverty wages are justified. The idea that someone who works shouldn’t make a living wage because they’re “unskilled” is ridiculous,

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Dr Jay Watts @shrinkatlarge.bsky.social · 25/04/2025

The right to social security is outlined in Article 9 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), ratified by the UK in 1976.

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Melissa @mcochrane13.bsky.social · 25/04/2025

Currently the Labour government are getting away with whatever they want by using the chaos of the US to hide behind. They know that people are distracted - the best time to push through bills and policy. Thank you for writing about this bill giving it the coverage it needs.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 25/04/2025

JFC. Labour might as well take a goddamn torch to everything that was good or better before they got into power. They’re burning us all, and our environment, down, in favour of a gilded ‘growth’. Growth that really equals ruin. I feel sick, sick, sick and devastated. #LabourDisaster

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Dr Jay Watts @shrinkatlarge.bsky.social · 25/04/2025

New “The process feels like you are on trial for murder, they act like they are trying to catch you out and that you are begging". Excellent and much needed Amnesty report on the welfare system which pushes so many into barely liveable lives. tinyurl.com/4w9rfaar

tinyurl.com

DWP claimants give verdict on welfare system - 'You're not treated as human'

Amnesty International's new research, which involves interviews with hundreds of people on benefits, claims the current welfare system is 'consciously cruel' and ruining lives

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 23/04/2025

The best new housing options for my move have been scrapped as a possibility as I’m under 55. Because I’m younger and disabled there is no, zero, zilch fully accessible housing open to me. They tried to put me up a high rise 🤯 I’m worried. #pwME #MECFS #DisabilityHousing #Accessibility

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Ellie @madknittrsteaparty.bsky.social · 23/04/2025

I shouldn't be surprised, but it's just WRONG that the more ill & incapacitated I get, the less the NHS wants to see me, the less kindness & empathy they have for me. 1st time in the surgery in wheelchair too. #NHS this is far more inconvenient for me than for you #pwME #MECFS #disability #POTS

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 23/04/2025

A lot of the issues I have with my social care are mainly caused by systemic problems. Mainly I mean underfunding via local authorities, which are underfunded by central government. Social care should be a top priority. It’s left to sink instead. #pwME #MECFS

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Maggie Boxey Writes @maggieboxey.bsky.social · 15/04/2025

My talk is now available to watch! Please watch, share, comment- all the things <3 #mecfs #millionsmissing #chronicillness #momsky #disabledsky youtu.be/JzKfi8LOMQU?...

youtu.be

I Am One of the Millions Missing | Maggie Boxey | TEDxOjai

YouTube video by TEDx Talks

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Carole Bruce @cabruce.bsky.social · 22/04/2025

I have posted this in the comments underneath today’s article on #ME in The Times. The difference in treatment between #ME and my experience of #cancer was stark. It’s not all about me, it’s about the 4,O04 thousand of us being ignored and mistreated.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 22/04/2025

Some days having social care is really hard. Another random carer today. Came back to make my lunch a few hours after the breakfast shift…”You are still in bed?!” FFS read my damn notes. It’s not a choice. I’ve already done every physical thing I can manage this morning. Arghhh. #pwME #MECFS

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Dr Jay Watts @shrinkatlarge.bsky.social · 21/04/2025

We have over 800 signatures in just 70 hours! Our coalition — clinicians, researchers, carers, and most importantly, disabled people — will help the public and Parliament see how dangerous these cuts would be. Every signature adds weight. Thank you so much. ✍️ Please sign: tinyurl.com/yw8bzmxr

tinyurl.com

Disability Benefits Cuts

Open Letter: Disability Benefits Cuts Are Creating a Public Health Emergency To: Chancellor Rachel Reeves, Secretary of State for Work and Pensions Liz Kendall, Prime Minister Sir Keir Starmer, and Me...

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Simon Lamrock @simonlamrock.com · 19/04/2025

Thousands show solidarity at #TransRightsAreHumanRights Demo in Parliament Square.

Photo of thousands of people with placards and flags packing Parliament Square.

Thousands show solidarity at #TransRightsAreHumanRights Demo in Parliament Square.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 19/04/2025

I was in a very scary place with this 6 months ago. I only got out of it by finally having care provided and kind of stabilising my PEM situation. I still get PEM easily, but I’m out of rolling PEM at least. Cruel, unavoidable pain. #pwME #MECFS

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Charlie Park @givesnospoons.bsky.social · 18/04/2025

It's been a heavy week. Sending love to everyone xx. Transwomen are women. Transmen are men. Autistic children and adults are loved, valued and wonderful. Late diagnoses of ADHD and Autism is ABOUT DAMN TIME. Violence in our community is caused by but also healed by community; not more violence.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 17/04/2025

Some bad news for people living with #MECFS. Under the 2026 "passback", the "reorganization" of HHS and CDC would cut all ME/CFS funding from CDC. I think this is a 'scoop', since I'm unaware of anyone having reported on it, yet. Let's talk about what a passback is, and what it means for us. 🧵🧪

National Center for Emerging and Zoonotic Infectious Diseases
The Budget discontinues funding for the Lyme Disease,. Prion Disease, Chronic Fatigue Syndrome and the Harmful Algal Bloom programs to prioritize funding for core infectious disease and surveiIlance activities. The Budget also includes $25 minion for the wastewater surveillance program within the Emerging Infectious Diseases PPA."

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 17/04/2025

Some banal/everyday things I miss doing due to M.E. - Sitting up without consequence - Talking without consequence - Walking more than a few metres - Drinking from a normal cup - Showering - Dressing - Cooking a meal - Stepping outside Still think it’s ’not that serious’? #pwME #MECFS

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chiller @chiller.eurosky.social · 16/04/2025

Please don't tone police trans people today. They are absolutely fucking entitled to be furious and afraid, and to express that in whatever way feels right. Sober reflection is for the unaffected. And counting the few remaining blessings can absolutely fuck off into the sun.

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mike @staykinduniverse.swifties.social · 16/04/2025

made a thing

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Finn McLellan @saranadosfiction.com · 16/04/2025

Right, because I've now seen misunderstandings of this enough times that it's got me worried that people don't know this - transgender people in the UK are protected by the Equality Act 2010 under the category of gender reassignment. *That* was not under discussion today and hasn't changed.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 15/04/2025

Aww but the nice Labour government just wants to help disabled people into work… #DisabilityRights

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mike @staykinduniverse.swifties.social · 15/04/2025

made a thing inspired by @georgemonbiot.bsky.social

the old normal was madness
george monbiot

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Yann (ME/LC) @me-cfs.bsky.social · 15/04/2025

When we explain PEM to doctors, carers etc. they usually get that active exertion (running, walking, showering, reading etc.) can lead to PEM. But often don’t understand passive exertion (being in a chair, noises, someone talking to you, hot temperatures etc.) can lead to PEM.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 15/04/2025

Tell me your doctor forgot to send your beta blocker prescription to the pharmacy without telling me your doctor forgot to send your beta blocker prescription to the pharmacy. Crash incoming. Thanks doc. #pwME #MECFS #POTS

A screen grab of the heart rate graph from Visible app showing A LOT of red meaning the person’s in over exertion zone. The pace points at 8.3 are shown top left hand corner. The person only gets 10 pace points a day. It’s therefore a bad day having used most points by 11am thanks to lack of beta blockers.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 14/04/2025

“You won’t let this break you”. But it does. It does break me. Over and over again, every few days, weeks and months. I wouldn’t be myself if this level of isolation, pain, loss and neglect didn’t break me. I just somehow keep breathing. That’s my life with severe M.E. #pwME #MECFS

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 13/04/2025

Standards are often in the bin when it comes to home care provision. This is the second time different carers have left their USED masks like this on my kitchen worktop. I’m livid. And I’m in a crash and I’m not fit state to deal with this. What is even the thinking?! #pwME #MECFS #HomeCare

A used respiratory face mask left by a home carer on top of the kitchen worktop where food is prepared for the person being cared for.

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Maddy Ob Art @maddyobart.bsky.social · 10/04/2025

What random places have you ended up sitting/lying down in after your body has crashed? Eg. Sit in shop aisle, lay in ikea pallet. Please let know know in comments! When I’m well enough (lol) I’ll illustrate & share. #Disability #Spoonie #ChronicIllness #pwME #LongCovid #Lyme #POTS #MECFS

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 12/04/2025

Seeing the sadness in my mum’s eyes on days she comes to visit but I just can’t function, or speak, kills me. Not just because I feel like I’m letting her down. But because the hurt in her eyes tells a story I can’t bear to take on board. She’s grieving the old me too. #pwME #MECFS

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Niko Suvisto @nikosuvisto.com · 11/04/2025

Today it’s time to launch a big project I’ve had the privilege of working on: A Quiet Storm—an online art gallery showcasing the artwork of people living with severe ME/CFS. 1/7 www.aquietstorm.me #MECFS #pwME #OnlineArtGallery #AQuietStorm

aquietstorm.me

a quiet storm - an online gallery

An online art gallery showcasing the artwork of people living with severe ME/CFS

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 10/04/2025

I didn’t think I’d be able to read and understand poetry again. So many, many months feeling the absolute loss of it. It tires me quickly. I have to be wary of PEM. But a little bit of ‘me’ has come back from delving into these pages. I highly recommend both books ❤️ #pwME #MECFS #Poetry

A photo showing two poetry books resting on the legs of the person wearing sage green jogger trousers. The bottom book is ‘Poems’ by Elizabeth Bishop and has a black and white photo of the author in a chair outside on the cover. The top book is a bright pink cover and simple has the writer’s name, Diane Di Prima, and title of the book ‘Revolutionary Letters’ written on it.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 09/04/2025

Progress is progress! This is the first time I’ve had an increase in my FUNCAP score since last August! OK, it’s only 0.3 of an increase, but that is so meaningful to me. I can sit up a little more and read a few pages of a book and a few poems a day 🥰 What a gift! #pwME #MECFS

A screenshot from the visible app showing today’s Functional Capacity (FUNCAP) score. The image shows a semicircular ‘dial’ type diagram with the number 0.0 on the left going up to number 6 on the right. The person has scored 1.5, up by 0.3 from last month’s check in.

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Richard Amm ♿ (Disability & Research) @richamm.bsky.social · 08/04/2025

First, we had Disability Rights, then we had Disability Justice, and now I would like to unveil my own framework: Disability Vengeance.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 09/04/2025

The man who delivered my meds yesterday told me my life was so hard because of ‘all these bloody people coming into the country’. This is what happens when a government legitimises racism and scapegoats the most at risk. Racism on the goddamn doorstep, no shame, no holding back. #PunchingDown

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Peter Stefanovic @peterstefanovic.bsky.social · 08/04/2025

Ill and disabled people will be made ‘invisible’ by UK benefit cuts, say experts Those who lose benefit payments will find it difficult to access care and support services, says Policy in Practice www.theguardian.com/society/2025...

theguardian.com

Ill and disabled people will be made ‘invisible’ by UK benefit cuts, say experts

Those who lose benefit payments will find it difficult to access care and support services, says Policy in Practice

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Naomi Harvey PhD @naomidharvey.bsky.social · 08/04/2025

I’m quoted in this important piece. I really hope that more patients can avoid unnecessary tilt table testing if they can take articles like this to their doctors. Many ppl warned me of the risks, but I didn’t feel like I could decline my doctors request for the test. I’ve not been the same since 💔

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 08/04/2025

My neighbours are playing happy hardcore full blast beneath my bedroom. I’m being forced to camp in the living room this eve. Sound sensitivity is not playing nice. #pwME #TapsAff #IYKYK

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Adam Fare 🖤🤍💜 @adamfare1996.bsky.social · 08/04/2025

Everything you “save” by slashing disability benefits, you’ll pay for multiple times over in increased social & healthcare spending. In more people being out of work. In more small businesses going bust. In the UK car market collapsing, In the economic downturn. In human life.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 08/04/2025

I had my online meeting with my MP on benefits cuts. From bed. He’s a government minister. He trotted out the ‘messaging’ they’ve clearly been told to repeat ad infinitum. He’s on the board of a disability charity?!! Basically, felt like a lost cause. #BenefitCuts #DisabilityRights

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 03/04/2025

A break from socials is good! The world is still turning, but my mind is racing less. I’ve had a meeting with my MP on benefits, been to the hospital and been offered a hugely inappropriate home from the housing. Didn’t have to take it. I’m liking spring, though! 🌸 #pwME #MECFS #Bipolar

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 28/03/2025

Right. I think I need a mental health break. Bipolar + ME + major benefits cuts stress is starting to bite. Folks with bipolar on benefits, we have to guard our mental health with all we’ve got. It’s not easy. Take a break from the news/scrolling if you can ❤️ #BenefitCuts #pwME #Bipolar

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Frances Ryan @francesryan.bsky.social · 27/03/2025

I’m seeing even well-meaning accounts criticise disability cuts as hitting “the most vulnerable.” Reminder: disabled people are not inherently vulnerable. We are vulnerable when governments choose to withhold the resources disabled people need to live dignified and secure lives.

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 27/03/2025

I say this with kindness. Folk too disabled to open their own door need the carers who feed, wash and dress them to have access to their homes. I’m too disabled to open my own door four times a day to let my carers in. I don’t get a choice to withhold access. #pwME #MECFS

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 27/03/2025

A total stranger just let themselves into my flat, didn’t introduce themselves, and started pottering around my kitchen. Social care in the UK is wild! This was a replacement carer. My usual person called off. Wtaf?!! She turned out to be lovely and thought I’d been told. #SocialCare

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M a r c u s 🏳️‍🌈🇧🇧 @marcusjdl.bsky.social · 27/03/2025

It seems that “disabled people who are unable to work or who need support to work should live a comfortable life and not struggle” is a radical opinion in this here race to the bottom UK

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 27/03/2025

My MP sits in one of the most impoverished areas of Scotland. He promised to tax the rich. People here are up against it. Lots of ill health and disability, a direct result of poverty and poor services. He’s a gov minister and Starmerite. He’s happy to starve his constituents. #BenefitCuts

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chiller @chiller.eurosky.social · 27/03/2025

@darrenpjones.bsky.social just got a £2,500 pay rise that we pay for. I'm too disabled to work, I have no choice in the matter, and I'm about to get at least £4,000 cut on my income. It'll actually be more, as my PIP entitlement is a gateway that also allows me other benefits.

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