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@notunpackedyet.bsky.social
1.4K followers 820 following 2.3K posts

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

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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
@simmaronresearch.bsky.social NIH R01 Grant: New 5-year NIH funding will study mTOR dysfunction in ME/CFS, building on Simmaron’s rapamycin research; a placebo-controlled rapamycin trial and biomarker test are also planned www.simmaronresearch.com
simmaronresearch.com
Simmaron Research
Simmaron Research plays a key role in developing scientific research to improve diagnosis, treatment and medical understanding of ME/CFS and other neuroimmune diseases.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Autonomic Movement Disorders & Misdiagnosis: Seizure-like movements may be misdiagnosed with PNES/FND when OI isn't considered; PNES/FND can be comorbid too. www.frontiersin.org/journals/neu...
frontiersin.org
Frontiers | Improved outcomes for patients with autonomic movement disorders originally evaluated for psychogenic non-epileptiform spells
BackgroundPatients experiencing autonomic storms related to dysautonomia may present with abnormal movements, including convulsions, tremors, and myoclonus. ...
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 17h
Trust me, this is one of those good-silly things. Matt Berry is now a sentient Ikea shelf in Skyrim | PCWorld share.google/oJYffMHY6TFh...
share.google
Matt Berry is now a sentient Ikea shelf in Skyrim
A new official mod adds the classic Ikea "Kallax" shelf to Skyrim. Fans of the Swedish furniture giant will likely find it a lot of fun.
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Jess Harwood Art @jessharwoodart.bsky.social · 01/10/2026
Yesterday NSW approved NSW’s largest ever coal expansion to HVO’s coal mine in the Hunter. The next step is federal approval. I know AI is the hot topic of the moment but we *know* coal and gas are driving the climate crisis. Let’s not lose sight of that and the decisions being made in its shadow.
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Adam Bienkov @adambienkov.bsky.social · 30/09/2026
Kemi Badenoch condemned Reform's ban on critical journalists covering their conference as "authoritarian", saying her own party would never do the same as "we believe in free speech. We believe in a free press." Now the Conservatives have banned Byline Times from their conference
bylinetimes.com
Kemi Badenoch's Conservatives Ban Byline Times From Conference After Condemning Reform for Journalist Ban
The ban comes just weeks after the Conservative leader called Reform's barring of critical journalists from their conference an "authoritarian" attack on the free press
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😱 Spooky SpectreKILLoquy 🔪 🩸 @caulimovirus.bsky.social · 13/09/2026
Union workers on Mars submitting their demands: 8 hours 13 minutes and 11 seconds for work 8 hours 13 minutes and 11 seconds for rest 8 hours 13 minutes and 11 seconds for what we will
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maura quint @mauraquint.bsky.social · 01/10/2026
Yes every woman has been harassed, many assaulted. But every woman has also experienced invisible loss from moments she avoided harassment. She felt a space becoming unsafe, so she left, while men stayed on. And in leaving, she lost: opportunities, experiences, learning, promotions, even simply fun.
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 01/10/2026
Does anyone else with #MEcfs find that, the day after exertion (or more like the middle of the night) they wake up with their guts painfully clenched? Like my intestines are being continuously, mildy electrocuted. When it releases, the crash is ending. Used to have same thing with migraine pre-ME.
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Dr Seán DOOLAN 🏴󠁧󠁢󠁳󠁣󠁴󠁿 🇮🇪 @sdinpraxis.bsky.social · 01/10/2026
The cryosphere is in trouble due to climate change, and it's accelerating loss. "Glaciologists in the Alps considered 2% of ice lost in a single year to be 'extreme'. This year has seen an estimated 5.5% disappear."
bbc.co.uk
Swiss glaciers suffer 'disastrous' year of ice loss
Scientists say such rapid melting is no longer surprising given the pace of climate change.
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Reform Party UK Exposed @reformexposed.bsky.social · 01/10/2026
Reform UK’s Welsh leader works for firm that helps foreign workers migrate to the UK nation.cymru/news/reform-...
nation.cymru
Reform UK's Welsh leader works for firm that helps foreign workers migrate to the UK
Martin Shipton Reform UK’s leader in Wales works part time for an organisation that helps foreign migrants obtain visas to work in the UK, we can reveal. Helen Jenner recently took over from Dan…
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Senator Lisa Blunt Rochester @bluntrochester.senate.gov · 30/09/2026
Finally, a member of this adminsitration that tells the truth.
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Jack Hopkins-The Original @therealjackhopkins.bsky.social · 01/10/2026
WARNING: The Ellison family is about to own CBS News AND CNN. A judge just cleared the deal. Closing: days away. When one family controls what tens of millions watch, democracy loses a watchdog. Independent media isn't a luxury. It's your last line of defense.
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EndMalnutritioninME @malnutritionme.bsky.social · 30/09/2026
Many people with severe and very #severeME do not receive enough care time to meet their basic daily needs of eating, drinking, washing, and toileting. People with #ME need recovery time between these activities and care visits do not allow for this.
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sarah boothby @swastrosarah.bsky.social · 30/09/2026
m.youtube.com/watch?v=XPZp... 2022 #MillionsMissing in Parliament Square UK. Not until 2027 will @england.nhs.uk be abolished. 5 years, many more deaths. (Most are not reported. Some recorded as CFS). Thanks as always to @alemmatthees.bsky.social mentioned just after half way in.
m.youtube.com
Sarah Boothby at #MillionsMissing London 2022
YouTube video by The ME Action Network
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Ben Franklin’s ghost @ben-franklin-ghost.bsky.social · 30/09/2026
They (GOP) know this to be true and it will always be true.
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Al Jazeera English @aljazeera.com · 01/10/2026
Marie-Celestin Karondwa died of his injuries after being beaten at his home in Butembo, an Ebola hotspot, on Sunday.
aljazeera.com
Mourners bury DR Congo official killed after defending Ebola response
Marie-Celestin Karondwa died of his injuries after being beaten at his home in Butembo, an Ebola hotspot, on Sunday.
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MarzBarz McGuilicutty @mykulchadwyk.bsky.social · 30/09/2026
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 01/10/2026
The council closes the allotment, and tells residents to waste/peel veg, not eat local eggs...and what are they doing to stop the factory continuously polluting?
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 01/10/2026
"An investigation by the Nerve has revealed that Palantir has £670m of contracts with the UK government. It gained a foothold through a no-bid contract during the pandemic and has rapidly expanded across multiple departments." Thiel is vile and Palantir is neoliberalism on steroids, but Gov is weak.
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THE NERVE @thenerve.news · 30/09/2026
“That, to me, was an implicit threat. It feels very Palantir. Very Big Brother”: MP @labourlewis.bsky.social reveals Tom Watson has warned him over criticising Palantir By @carolecadwalla.bsky.social www.thenerve.news/p/clive-lewi...
‘We’re watching you’: MP Clive Lewis reveals Tom Watson has warned him over criticising Palantir. (l-r): Clive Lewis, Tom Watson and the Palantir logo, against a pink background
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Jacob Öberg @profjacob.bsky.social · 30/09/2026
🚨🚨 @coe.int of Europe said yesterday that the #US formally notified it that it would leave the Group of States against Corruption, or #GRECO. Only two other countries have left GRECO before — #Russia and #Belarus. The fall of the #US on the world scene is striking. apnews.com/article/trum...
apnews.com
US withdraws from European anti-corruption panel in latest shift away from global groups
The Trump administration has withdrawn the United States from a top European anti-corruption watchdog.
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Humor Satire Memes @funnysnarkyjoke.bsky.social · 30/09/2026
meme showing a wide shot of a body of water. Text at the top reads: "Canadian reboot of 'Jaws' drops this month!" In the distance, a person stands on a paddleboard. In the foreground, the large antlers and top of the head of a swimming moose poke out above the surface of the water, mimicking a shark's fin.
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Davis Allen @davisallen.bsky.social · 30/09/2026
We use primary sources to show how companies like ExxonMobil, Shell, BP, and Chevron ignored their own scientists’ calls for urgent action and planned how to protect their business interests; (...)
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NPR @npr.org · 01/10/2026
Switzerland's glaciers are disappearing at a record pace. More than 5% of their ice has vanished this year alone — threatening water supplies, ecosystems and communities across Europe. n.pr/4z7IApd
n.pr
Swiss glaciers suffer another year of record ice loss
Switzerland's glaciers are disappearing at a record pace. More than 5% of their ice has vanished this year alone — threatening water supplies, ecosystems and communities across Europe.
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Humor Satire Memes @funnysnarkyjoke.bsky.social · 01/10/2026
@NoLieWithBTC

The Trump administration just announced they will be building a massive $200 million gold-plated ballroom at the White House after signing a law cutting 17 million Americans' health care.

Big Tucson Dad
@BigTucsonDad

Listen man, if you wanna live in the palace of Versailles then that's fine, but you can't act surprised when the people eventually start sharpening the guillotine
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Humor Satire Memes @funnysnarkyjoke.bsky.social · 30/09/2026
stonekettle
@threads
3h

If your government is loudly demanding the dissolution of the International Criminal Court, the international court that tries war crimes, well, then the odds are pretty high that your government is committing war crimes.

A lot of war crimes.
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 29/09/2026
Please god, let me have some function tomorrow so I can actually get my job done and not get fired. #MEcfs
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Robert Reich @rbreich.bsky.social · 29/09/2026
Tyrants view educated citizens as their greatest enemy. Slaveholders stopped the enslaved from learning to read. Nazis burned books. Dictators censor media. That’s why Trump is attacking education, science, museums, the media, and the arts – to prevent us from learning. It's Fascism 101.
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Miles W. Griffis @mileswgriffis.bsky.social · 29/09/2026
"John Richard Green, who is imprisoned in Texas, wrote that, w/ Long COVID, his health is “more messed up than the floor of a New York cab...Now I am bedbound, sick, and all alone." Vital feature by @octoberk.bsky.social about the disease's invisibility in prison. thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
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Caroline Lucas @carolinelucas.bsky.social · 29/09/2026
So pleased to hear this confirmed in the PM’s speech. Big congrats to @makevotesmatter.bsky.social and all who’ve campaigned for it! At last we have a chance to restore trust in our politics with a system where “everyone’s views count and everyone’s vote matters” 👏👏👏
theguardian.com
Andy Burnham expected to say he will push ahead with electoral reform plans
Exclusive: Labour conference speech will kick off process that could replace current system with proportional representation
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Compassion in World Farming UK @ciwf.org.uk · 29/09/2026
This #FLWDay, we're highlighting one of the biggest inefficiencies in our food system. For every 100 calories of grain fed to animals, just 3-25 calories of meat are produced. We need a food system that works for people, animals and the planet. 🌍
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Juraj Mikurcik @jurajmikurcik.bsky.social · 29/09/2026
The Crown Estate made a £1.1 billion profit in 2025 🫰
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Alice Roberts @profaliceroberts.bsky.social · 29/09/2026
Reform want to indoctrinate our children. Freedom of (and from) belief is a human right. humanists.uk/2026/09/10/s...
humanists.uk
Reform UK Braverman promises 'consequences' if pupils don't sing hymns
Reform UK has said schools will face ‘consequences’ if they fail to make pupils regularly sing hymns and the national anthem under a Reform government. The party’s education spokesperson, Suella Brave...
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 29/09/2026
Finally! A government that is growing a spine?
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ACCR @accr.bsky.social · 29/09/2026
TotalEnergies raised its share buyback target for the fourth quarter and promised to increase dividends by more than 5 per cent annually until the end of the decade as the French major profits from soaring oil and gas prices. www.ft.com/content/1cd3...
ft.com
TotalEnergies boosts buybacks and dividends as oil prices surge
French energy company increases shareholder payouts as effect of Iran war increases cash flows
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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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Institute of Genetics and Cancer @uoe-igc.bsky.social · 28/09/2026
Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social and Joshua Dibble who are all involved in this meeting.
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Dr Julia Grace Patterson @jujuliagrace.bsky.social · 28/09/2026
Let’s hope so!! Link to article: www.telegraph.co.uk/politics/202... jujuliagrace.substack.com
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Robert Reich @rbreich.bsky.social · 28/09/2026
We don’t allow corporations to come up with new nuclear weapons or biological pathogens. If a product is potentially dangerous, it should be regulated and corporations should be held accountable for wrongdoing. Why would AI be any different? www.commondreams.org/news/ai-securi…
commondreams.org
AI Giants Probe 'Tens of Thousands' of Security Incidents—Some Involving Government Sites | Common Dreams
Security researchers investigate tens of thousands of artificial intelligence security incidents, fueling fresh calls fo
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 28/09/2026
👀👀👀👀👀👀👀👀
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 28/09/2026
This is v worrying, to destroy testimony of such abuse - unless it's know, there's no justice. "Many children experienced physical and sexual abuse, disease, neglect and despair. Over 3,200 deaths at residential schools have been confirmed...and the true number of deaths is likely greater."
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Chris Ponting @cgatist.bsky.social · 28/09/2026
The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs
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Defend Our Juries @defendourjuries.bsky.social · 26/09/2026
A message for Andy Burnham from Rob Del Naja (Massive Attack), Huda Ammori (Co-Founder, Palestine Action), and Michael Mansfield KC. Deproscribe Palestine Action. www.wedonotcomply.org
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Zack Polanski @zackpolanski.bsky.social · 28/09/2026
This Labour government could have responded to the genocide in Gaza in so many ways, instead they cut aid. This is a dereliction of duty.
Stuff of nightmares UK cuts aid to Un Gaza food operations by 78%
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Zack Polanski @zackpolanski.bsky.social · 27/09/2026
Labour are planning to extract more oil and gas from the North Sea despite the thousands of deaths from excess heat this summer. We cannot allow them to win in Holborn & St Pancras and think that they can get away with this. Vote Green. For our communities and our planet.
Labour are planning to extract more oil and gas from the North Sea despite the thousands of deaths from excess heat this summer.

We cannot allow them to win in Holborn & St Pancras and think that they can get away with this.

Vote Green. For our communities and our planet.
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Holly Brockwell @hollyqueenofspayeds.com · 26/09/2026
We're trying to find a home for, and I quote, "the Pissfingers of cats." Any takers? ❤️
Three screenshots of our facebook post about Jaffa Cake the unlucky mogJaffa in his cone of shame
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Firstname Lastname #FuckTrump @notunpackedyet.bsky.social · 27/09/2026
#MEcfs
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Prem Sikka @premnsikka.bsky.social · 27/09/2026
Private equity controlled TalkTalk, UK's 4th largest broadband provider, facing administration. Loaded with debt by PE, asset-stripped, low investment, poor service. PE control of essential services damages economy and national security. Neoliberals eye a bailout.
lbc.co.uk
National security concerns as broadband giant TalkTalk 'could go into administration within days' | LBC
Security officials are warning that the Ministry of Defence could be impacted if the telecom provider goes under
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cicadaqueenV @cicadaqueenv.bsky.social · 26/09/2026
Rent is due on the first and we don't have enough funds to cover it... Please help if you can. gofund.me/64ad02f20 #MutualAid #HelpSky #MECFS 💸💕
gofund.me
Donate to Support Violet Through Her MECFS Struggle, organized by Violet Rin
Hello, my name is Violet. I've set up a couple of GoFundMe's in the past to hel… Violet Rin needs your support for Support Violet Through Her MECFS Struggle
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sasha @2damntrans.bsky.social · 26/09/2026
Astonishing really how ADHD-denialism so closely matches early trans-denialism (say, a decade ago, before it went mask-off eliminationist), to the point that it includes the exact same personalities, again vomiting their know-nothing opinions all over the place.
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