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@notunpackedyet.bsky.social

Here to talk about #MEcfs, #MEspine, #hypermobility, #POTS, #hEDS, #LongCovid, #ChronicIllness and #disability ...but I also have opinions on other things. You have been warned :P

1,132 Followers  |  654 Following  |  1,873 Posts  |  Joined: 03.10.2023  |  2.136

Latest posts by notunpackedyet.bsky.social on Bluesky

* Michiel
Sorry; autocorrect.

09.12.2025 20:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

πŸ™Thank you for listening Visible and for prioritising patient safety.
πŸ’™ This is ace trauma-aware governance.
πŸ’ͺ When digital health treats UX as curated space and epistemic harm as real, we all move forward - and Visible becomes an even stronger community partner.

09.12.2025 16:19 β€” πŸ‘ 32    πŸ” 9    πŸ’¬ 5    πŸ“Œ 2

Hi Michael. You've probably already seen, but I just noticed this response has been put out. Seems well-handled, although I've only had a quick glance so far
bsky.app/profile/long...

09.12.2025 18:26 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 2    πŸ“Œ 0
Researchers Dr. C. Gunnar Gottschalk and Dr. Avik Roy are pictured. Quote from Dr. C. Gunnar Gottschalk reads, "This funding from Solve M.E. will help us continue enrollment in our ongoing expanded phase and cover the cost of study drug and safety labs. Our goal is to develop a predictive test to identify which patients are more likely to benefit from rapamycin or other mTOR-targeted therapies.” At the bottom of the page are logos for Solve M.E. & the ME/CFS Catalyst Awards.

Researchers Dr. C. Gunnar Gottschalk and Dr. Avik Roy are pictured. Quote from Dr. C. Gunnar Gottschalk reads, "This funding from Solve M.E. will help us continue enrollment in our ongoing expanded phase and cover the cost of study drug and safety labs. Our goal is to develop a predictive test to identify which patients are more likely to benefit from rapamycin or other mTOR-targeted therapies.” At the bottom of the page are logos for Solve M.E. & the ME/CFS Catalyst Awards.

Your support funds bold ME/CFS and Long Covid research. This year, our Catalyst Award helped expand a promising rapamycin trialβ€”and early results are encouraging. Join our $321,000 match & keep the momentum going. πŸ’™ #MovingTheScienceForward
giving.solvecfs.org/page/FUNRSFN...

04.12.2025 18:29 β€” πŸ‘ 3    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0

Sooooooo much!

09.12.2025 15:12 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Breaking:

NEW YORK (AP) - Federal judge grants Justice Department's request to unseal records from Ghislaine Maxwell's 2021 sex trafficking case.

09.12.2025 14:30 β€” πŸ‘ 1925    πŸ” 489    πŸ’¬ 67    πŸ“Œ 30
Preview
EU closes deal to slash green rules in major win for von der Leyen’s deregulation drive Controversial β€œomnibus” bill saw center-right EU lawmakers side with the far right to water down environmental standards.

🚨🚨Major #EU news: More than 80 percent of Europe’s companies will be freed from environmental reporting obligations after @europarl.europa.eu and @consilium.europa.eu reached a deal on a proposal to cut green rules on Monday. 🧡
www.politico.eu/article/eu-s...

09.12.2025 08:34 β€” πŸ‘ 64    πŸ” 46    πŸ’¬ 16    πŸ“Œ 70

You’d never know this was what was decided as part of that tribunal ruling…

09.12.2025 08:27 β€” πŸ‘ 369    πŸ” 121    πŸ’¬ 8    πŸ“Œ 4
Preview
Petition: Commit to a referendum in May 2028 asking the next government to rejoin the EU Polls show that many people of the UK believe leaving the EU was a mistake. It is time politicians stopped ignoring the views of the people. The government needs to consult the people about what to do...

Please Sign and Share!

Look at the news even just over the last 3 weeks. The ship has been turned around!

If the government has a referendum BEFORE the next election, it can force parties to write their manifestos based upon the results.

Rejoin can win!

petition.parliament.uk/petitions/74...

08.12.2025 16:30 β€” πŸ‘ 68    πŸ” 52    πŸ’¬ 4    πŸ“Œ 4

I hate to share this, because it's so painful and I don't want to upset the community even more, but I do want to remember. There needs to be restitution (for those of us still alive to see it). There needs to be accountability. #MEcfs

09.12.2025 09:55 β€” πŸ‘ 4    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0

I always thought it was brave of the Tories to front a mayoral candidate who was the batty neighbour from a 70s sitcom that they can't repeat any more because attitudes have changed.

08.12.2025 22:10 β€” πŸ‘ 210    πŸ” 21    πŸ’¬ 8    πŸ“Œ 1

Society: *treats disabled people like shit*
Also society: People just wanna be disabled so they can feel SPECIAL!

02.12.2025 21:50 β€” πŸ‘ 457    πŸ” 204    πŸ’¬ 6    πŸ“Œ 14
a sign that says 'check your phone now - together we can eradicate attention spans]

a sign that says 'check your phone now - together we can eradicate attention spans]

08.12.2025 15:40 β€” πŸ‘ 29    πŸ” 4    πŸ’¬ 0    πŸ“Œ 1
Preview
Donate To Uganda's LGBT Shelters, organized by Uganda LGBT Shelters Consortium UMSC Uganda is one of the most dangerous places in the world to… Uganda LGBT Shelters Consortium UMSC needs your support for Donate To Uganda's LGBT Shelters

7/ and if you want to support LGBTQ shelters in Uganda, please visit

gofundme.com/minorityshelters

06.12.2025 15:42 β€” πŸ‘ 30    πŸ” 22    πŸ’¬ 0    πŸ“Œ 0
Bronze plaque saying "A Letter to the Future. Ok is the first Icelandic glacier to lose its status as a glacier. In the next 200 years all our glaciers are expected to follow the same path. This monument is to acknowledge that we know what is happening and what needs to be done. Only you know if we did it.  August 2019. 415ppm CO2"

Bronze plaque saying "A Letter to the Future. Ok is the first Icelandic glacier to lose its status as a glacier. In the next 200 years all our glaciers are expected to follow the same path. This monument is to acknowledge that we know what is happening and what needs to be done. Only you know if we did it. August 2019. 415ppm CO2"

TIL about a memorial ceremony in Iceland in 2019 to mark the end of a glacier, changing the place name from OkjΓΆkull to Ok (jΓΆkull = glacier). Uncompromising wording on the bronze plaque:
"This is to acknowledge that we know what is happening and what needs to be done. Only you know if we did it".

07.12.2025 17:17 β€” πŸ‘ 12602    πŸ” 5187    πŸ’¬ 115    πŸ“Œ 188
Preview
Three more Farage bloc MEPs alleged to have followed Russian asset’s script At least eight MEPs elected for Ukip or Brexit party now known to have been focus of efforts by jailed Nathan Gill

That bunch of misfits just keep on giving, corrupt to the core

Three more Farage bloc MEPs alleged to have followed Russian asset’s script
At least eight MEPs elected for Ukip or Brexit party now known to have been focus of efforts by jailed Nathan Gill
www.theguardian.com

07.12.2025 23:47 β€” πŸ‘ 14    πŸ” 7    πŸ’¬ 2    πŸ“Œ 0

But think of all the VCs who want a 'unicorn' for Xmas!

08.12.2025 00:19 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Preview
I’m 15 years old and have a disability. Social media has been a lifeline – why is the government kicking me off? | Ezra Sholl As I come to terms with life as a quadriplegic, Instagram and TikTok are a reminder that I’m not alone The government has decided that from Wednesday I should be banned from social media because of the potential harm it can cause. But as a teenager with a severe disability, who relies on social media for connection, community and access to a largely inaccessible world, this policy actually has the potential to create further harm. When I was 12, I was diagnosed with Hodgkin’s lymphoma, which triggered a rare nerve condition that has paralysed me. My preteen years were spent in an ICU ward, on a ventilator, going through chemotherapy. Before I got sick I did not have any social media. It turned out that all I had to do was end up in a coma, because when I woke, I had a new iPhone14, with every accessibility feature. Having Instagram and Snapchat made me feel less disconnected. I had a window into the outside world, and my friends had a window into my world between hospital visits. Continue reading...

I’m 15 years old and have a disability. Social media has been a lifeline – why is the government kicking me off? | Ezra Sholl

07.12.2025 14:01 β€” πŸ‘ 32    πŸ” 17    πŸ’¬ 0    πŸ“Œ 2
Video thumbnail

πŸ“½οΈ WATCH: Photographer @annie-flanagan.bsky.social went to Clairton, PA, where residents live in the shadow of the country’s largest coke plant. Coke is a product used to manufacture steel.

This is what Annie saw β€” and inhaled β€” while on assignment in Clairton.

Link to our story below ‡️

08.12.2025 00:01 β€” πŸ‘ 585    πŸ” 267    πŸ’¬ 18    πŸ“Œ 20
Preview
Air Pollution From Industrial Facilities Is Far Worse Than Estimated The Trump administration has put a stop to EPA rules that would have required more than 130 industrial facilities to install air monitors to measure pollution. Millions of people living near these…

Our investigation showed that levels of benzene, a cancer-causing gas, were 37x higher than what the facility reported in the past.

The Trump admin has halted efforts to monitor for benzene near large industrial plants like this one, leaving communities in the dark about the air they breathe. (2/2)

08.12.2025 00:01 β€” πŸ‘ 604    πŸ” 289    πŸ’¬ 16    πŸ“Œ 19
If I were a doctor, I'd simply believe patients  -mybodyistryingtokillme.com

If I were a doctor, I'd simply believe patients -mybodyistryingtokillme.com

06.12.2025 14:43 β€” πŸ‘ 94    πŸ” 14    πŸ’¬ 2    πŸ“Œ 0
Preview
Labour bars trans women from main women’s conference The decision means trans women will not be allowed in the main hall

Labour bars trans women from main women’s conference in 2026 | The Independent share.google/JwrMCG4Tcb0l...

I do not know which is worse, the absurdity and cruelty of the Supreme Court Ruling or the absurdity and cruelty of The Labour Party?

#TransRightsAreHumanRights

06.12.2025 20:08 β€” πŸ‘ 16    πŸ” 5    πŸ’¬ 1    πŸ“Œ 1
Reply from Visable. I'm exhausted, I don't have the energy to write this out right now.

Reply from Visable. I'm exhausted, I don't have the energy to write this out right now.

06.12.2025 13:00 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

This passage shocked me to my core.

The loss of biodiversity isn't a tragic accident or oversight, it was the plan!

06.12.2025 10:44 β€” πŸ‘ 257    πŸ” 92    πŸ’¬ 18    πŸ“Œ 13
Preview
Jeffrey Epstein: US judge orders unsealing of grand jury records from abandoned case A similar request was rejected earlier this year, but a law passed by Congress last month overrides it.

Jeffrey Epstein: US judge orders unsealing of grand jury records from abandoned case

06.12.2025 10:46 β€” πŸ‘ 59    πŸ” 15    πŸ’¬ 1    πŸ“Œ 0

I have also messaged them. I would have thought the visible team understood the trauma we've all been through w biopsychosocial babble bullshit, and the fight that's still to come with that in the UK.

06.12.2025 10:57 β€” πŸ‘ 7    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

That's like letting the abuser in with a vulnerable population who are trusting Visable to on our side.

06.12.2025 10:08 β€” πŸ‘ 11    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

#MEcfs what the actual fuck?

06.12.2025 10:05 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Post image

What evidence is there that uplands like this were once covered by temperate rainforest, and would return to such a state naturally but for sheep?

Loads... 🧡

06.12.2025 06:25 β€” πŸ‘ 274    πŸ” 70    πŸ’¬ 7    πŸ“Œ 4

Even Greyhounds can spot corruption, but it seems we can't.

"In January 2023, the Ministry of Defence awarded Qinetiq β€” a company where Harborne was the largest single shareholder β€” a contract worth Β£80 million.”

06.12.2025 09:51 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

@notunpackedyet is following 20 prominent accounts