iiinova — where your digital self keeps evolving

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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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Renegade Research @renegaderesearch.bsky.social · 16/07/2026

Our project "Innovation Inn - Quantifying PEM" is happening soon!! 5 people of our team are gathering in one place. We'll test before & after inducing PEM. More donations lead to more testing we can do to help the cause. See our donation page for our wish list: www.zeffy.com/en-US/donati...

zeffy.com

Innovation Inn - Quantifying PEM

Five patient-researchers from our team will be coming together to induce Post Exertional Malaise (PEM) and track and measure as much as we can before, during,…

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Trish Greenhalgh @trishgreenhalgh.bsky.social · 01/08/2026

Hey @lewisgoodall.com here is our Lancet article on Long COVID. Happy to chat. www.thelancet.com/action/showP...

thelancet.com

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Long Covid Advocacy @longcovidadvoc.com · 12/05/2026

🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner

A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.

#mecfs #meawareness #RCPsychIC #pwME

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Libro.fm @libro.fm · 07/05/2026

Doing marketing for an ethical business is pretty fun, not gonna lie. Like, being able to say "We're an audiobook app that shares profits with indie bookstores!" is much cooler than "We're an audiobook app that makes our billionaire founder richer at the expense of everyone else!"

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 30/04/2026

David Tuller is crowdfunding for his salary & expenses for period up until end of 2026, when he plans to retire. His work has played a major role in the ongoing shift in how ME/CFS is viewed, and Long COVID along with it. Contribute until 5 May. 58% of goal achieved so far tinyurl.com/5exx924e

tinyurl.com

Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc

Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!

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Mark Hamill @markhamillofficial.bsky.social · 10/04/2026

I hate when fantasy films I made a long time ago begin to come true in real life.

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Cynthia Delmar 🇺🇸 ❤️ 🇨🇦 @cynthiadelmar.bsky.social · 25/03/2026

I love that SUFS is doing this!

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Renegade Research @renegaderesearch.bsky.social · 25/02/2026

Our next Clinician's Roundtable: Sleep Dysfunction & Breathing Mechanics with Avram Gold, MD, Assoc. Prof. of Medicine Stony Brook Friday March 6, 2026, 12 pm ET (US) Please share with clinician, researcher, patients networks! Will be recorded 🧵 Registration link with more about Dr. Gold below:

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Libro.fm @libro.fm · 13/02/2026

Romantic date night idea: Make the switch together from Audible or Spotify to Libro.fm, where every audiobook purchase supports your indie bookstore 💓

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Dr. Christian Scharun @christianscharun.de · 05/01/2026

Wir zeichnen ganz bald die neue Staffel MAITHINK X für euch auf und wollen dieses Mal über das sehr wichtige Thema ME/CFS sprechen. Hier ein Aufruf, dem ihr gerne folgen könnt, wenn ihr das mögt. Oder markiert einfach Personen, von denen ihr wisst, dass sie etwas dazu zu sagen haben. Danke euch! 🙏

ME/CFS
In der neuen Staffel MAITHINK X werden wir über ME/CFS sprechen. Dafür suchen wir Betroffene oder auch Angehörige von Betroffenen, die mit uns über ihren Alltag und Schwierigkeiten sprechen wollen. Schickt uns einfach eine DM.

Dazu ein Bild von Mai Thi Nguyen-Kim, die auf den Text zeigt.

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Ruth Brannan @flowerkraut.bsky.social · 29/12/2025

Hey Jon Stewart @weeklyshowpodcast.bsky.social I‘m #oneofthetwo still masking because a mild covid infection in 2022 has had devastating effects on my health. Hope to see you talk to a #longcovid #me/cfs expert on your show soon.

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Putrino Lab @putrinolab.bsky.social · 29/12/2025

Respectfully Jon Stewart, you were wrong on the @weeklyshowpodcast.bsky.social to mock people who mask. ICYMI: there are tens of millions of Americans who have been disabled by #LongCOVID and must do everything in their power to prevent further infections that make them vulnerable to further 1/

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Blätter für deutsche und internationale Politik @blaetter.bsky.social · 25/12/2025

#bestofblaetter: www.blaetter.de/ausgabe/2025... Auch gut sechs Jahre nach Ausbruch der Coronapandemie werden an Long-Covid-Erkrankte noch immer stark benachteiligt – sie passen nicht ins Bild einer an Wettbewerb und Leistung orientierten Gesellschaft.

blaetter.de

Vulnerabilität als Politikum

Vor 70 Jahren lud Edward Steichen ins Museum of Modern Art ein. Der Direktor für Fotografie hatte mit seinem Team mehr als 500 Arbeiten ausgewählt und präsentierte diese unter dem Titel „The Family…

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Billy Hanlon @bhanlon15.bsky.social · 25/11/2025

STAT News: 'I have long Covid. Don’t call my chronic disease a ‘journey’ By Peter Swenson, professor emeritus, Yale University 'Like an estimated 20 million Americans, I have an incurable post-acute infection syndrome that goes by the name of long Covid...' www.statnews.com/2025/11/25/c...

statnews.com

I have long Covid. Don’t call my chronic disease a ‘journey’

A “journey” is something you choose. No one chooses chronic illness.

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Dt. Ges. für ME/CFS @dgmecfs.bsky.social · 24/10/2025

📰 Die Zeitschrift Psychologie Heute hat einen Artikel zu ME/CFS veröffentlicht. Die Autorin Denise Schiwon ist selbst von #MECFS betroffen und arbeitete vor ihrer Erkrankung als Onlineredakteurin bei Psychologie Heute. (1/2) 👇 www.psychologie-heute.de/gesundheit/a...

psychologie-heute.de

Leben mit ME/CFS – eine Betroffene erzählt: „Ich vermisse mich“

Nach Corona kam der Crash – Erfahrungsbericht ME/CFS: Eine von ME Betroffene erzählt aus ihrem Alltag mit Schmerz, Erschöpfung, Mutlosigkeit

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LangzeitC @langzeitc.bsky.social · 25/10/2025

Unglaublich guter, detailierter Text einer Autorin, die an #MECFS erkrankt ist. Wer noch offene Fragen zu dem schweren Krankheitsbild hat, unter dem nun weltweit Millionen leiden, findet hier Antworten. Nach wie vor wird die Medikamentenforschung blockiert. www.psychologie-heute.de/gesundheit/a...

psychologie-heute.de

Leben mit ME/CFS – eine Betroffene erzählt: „Ich vermisse mich“

Nach Corona kam der Crash – Erfahrungsbericht ME/CFS: Eine von ME Betroffene erzählt aus ihrem Alltag mit Schmerz, Erschöpfung, Mutlosigkeit

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David Tuller @davetuller1.bsky.social · 22/10/2025

For several years, I have spent my time busting terrible and even fraudulent research into ME, ME/CFS, Long COVID, etc. If this crowdfunding works out, I will do one more in the spring and then retire from Berkeley. If you'd like to support my work, here's how: crowdfund.berkeley.edu/project/47768

crowdfund.berkeley.edu

David Tuller's Trial by Error Fall 2025

Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

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Blätter für deutsche und internationale Politik @blaetter.bsky.social · 15/09/2025

An ME/CFS Erkrankte sind gleich auf doppelte Weise mit ihrer Verletzbarkeit konfrontiert: Sie werden verletzt durch die Erkrankung selbst, aber auch durch den gesellschaftlichen Umgang damit: www.blaetter.de/ausgabe/2025...

blaetter.de

Vulnerabilität als Politikum

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Libro.fm @libro.fm · 11/09/2025

When you find out about Libro.fm, an alternative to Amazon-owned Audible that’s 100% employee owned, a Certified B Corporation, and shares profits with 4,000+ independent bookshops 😍

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Timothy Snyder @timothysnyder.bsky.social · 28/02/2025

Here I react to the shameful encounter between American leaders and media and the Ukrainian president. No doubt there were more, but I saw five failures on our side: of hospitality, decency, democracy, strategy, and independence. Please watch and share. snyder.substack.com/p/five-failu...

snyder.substack.com

Five Failures in the Oval Office (video)

America hurt itself badly today.

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Molly Jong-Fast @mollyjongfast.bsky.social · 22/02/2025

Here’s an opportunity to help some kids and get some cookies 🍪 digitalcookie.girlscouts.org/scout/sixk34....

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KEIN BOCK AUF NAZIS @keinbockaufnazis.bsky.social · 15/02/2025

Bochum bleibt stabil.💪

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Megan Ranney MD MPH @meganranney.bsky.social · 15/02/2025

🛟 That last-ditch chemo trial your family member was hoping to be in 🥙 The investigation of a food-borne illness outbreak in the next town over 🧠The study looking for preventable causes of Alzheimer’s 🧪The assurance that TAXPAYER-PAID-FOR studies & data collection see the light of day

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AltYellostoneNatPar @altyellonatpark.org · 11/02/2025

Musk's censorship algorithm on Twitter reduced our audience by about 95% since he bought it. So we moved over to blue sky. Help us build another great following right here where the skies are clear and the water is fine ;-) Please do Follow Retweet & repeat

Mama bear wrestling with her cub. She's got him by the rear paw, nibbling on his toes I guess. They're in spring grass with a tree on the left.

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Joerg Lau @joerglau.bsky.social · 11/02/2025

Der Weg in den autoritären Staat ist gesäumt mit Leuten, die Dir raten, es jetzt aber bitte nicht zu übertreiben.

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Franziska Davies @efdavies.bsky.social · 10/02/2025

Bald jährt sich die 🇷🇺 Vollinvasion der Ukraine zum dritten Mal. Entgegen aller Voraussagen, ist die 🇺🇦 nicht gefallen. Trotz aller düsteren Prognosen dürfen wir nicht aufgeben. Ich habe zum zweiten Mal einen Fundraiser für Evakuierungsfahrzeuge für Kyiv Defenders gestartet: bitte teilen & spenden!

paypal.com

Evacuation vehicles for Kyiv Defenders

Support Kyiv Defenders – Show Ukrainians that We Stand With Them Soon three years will have passed since Russia launched its full-scale invasion of Ukraine. Against all odds, Ukraine is still standin...

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sibylle dahrendorf @sibylledahrendorf.bsky.social · 05/02/2025

🎥#Trailer #ChronischKrank #ChronischIgnoriert Bitte reichlich streuen - Sendetermin 25.02.2025, um 22.35 Uhr, auf arte, ab 24.02.2025 in der arte Mediathek online abrufbar. "Der größte Skandal ist eigentlich die schiere Menge an Patienten" youtu.be/s_TrZVuqi-k

youtu.be

CHRONISCH KRANK - CHRONISCH IGNORIERT - TRAILER arte Doku

YouTube video by Sibylle Dahrendorf

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Martin Holland @fingolas.journa.host.ap.brid.gy · 30/01/2025

Der Platz vor der Oper ist wieder voll, #Hannover steht wieder auf. Gegen die #AfD, gegen #Rechtsextremismus und für die #Brandmauer! ✊🏼✊🏼✊🏼 #WirSindMehr #NoAfD #StopptDieAfD #Merz #Union #CDU

Tausende Demonstranten,b im Hintergrund die Oper

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Auswärtiges Amt @diplo.de · 27/01/2025

Heute vor 80 Jahren befreite die Rote Armee das Konzentrationslager @auschwitzmemorial.bsky.social Anlässlich des heutigen Tags des Gedenkens an die Opfer des Holocaust möchte Euch Außenministerin @abaerbock.diplo.de etwas vorlesen: #WeRemember

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María Richardson @diatoma.bsky.social · 25/01/2025

Singing the song everyone with #MyalgicEncephalomyelitis #MECFS knows by heart: "Is this still #PEM? Or new med side-effects? Perhaps a new infection though I haven't left the house. (Or a secret 4th disaster.)"🎶

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Oonagh Cousins @oonaghcousins.bsky.social · 11/01/2025

A big thank you to Theres Luthi for this highly insightful article about #ME and #LongCovid. It highlights the stigma & misattribution of psychological causes for ME, the harms of graded exercise therapy, and the far-reaching impact of this misunderstanding on those now living with Long Covid.

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Benjamin Wittes @benjaminwittes.lawfaremedia.org · 03/01/2025

A Ukrainian teenager, living on her own in New York City, has something to say to the Russia embassy staff.

youtube.com

#ProjectWithMe: Nastia Panchenko

YouTube video by #DogShirtTV

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Ruth Brannan @flowerkraut.bsky.social · 01/01/2025

Thank you to the Vienna Philharmonic Orchestra for donating €25,000 to ME/CFS research via @weandme.bsky.social, as part of their iconic New Year‘s concert, broadcast by over 90 TV channels worldwide. #pwME #pwLongCovid www.heute.at/s/muti-dirig...

heute.at

Muti dirigiert Neujahrskonzert "zum letzten Mal"

Am 1. Jänner 2025 eröffnen die Wiener Philharmoniker und Riccardo Muti das Jubiläumsjahr zum 200. Geburtstag von Johann Strauß Sohn live im ORF.

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Katja Diehl @katjadiehl.bsky.social · 26/12/2024

1/x Danke für dieses Stück über täglichen misogynen Kackmist. Dass es @ardenthistorian.bsky.social und @rebekkaendler.bsky.social innerhalb von Stunden gelang, so viele Menschen hinter der Recherche einer klassischen "Karriere" eines sexistischen weißen cis-Mannes zu vereinen, gibt mir Zuversicht.

Cover des Podcasts, hellbeiger Hintergrund, rote Schrift: Die Causa ttthilo Mischke - der Titel ist Anspielung auf den Mann, um den es geht - Thilo Mischke - und das Format, das er bald moderieren soll - titel thesen temperamente.

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sarah boothby @swastrosarah.bsky.social · 20/12/2024

This is an excellent description of how #MEKills from malnutrition. The Warburg effect accounts for so many presenting symptoms in #VerySevereME. Thanks to David Putrino, Amy Proal and the Cohen Center at Mount Sinai for joining the dots and making them public. www.youtube.com/watch?v=U7TC...

youtube.com

Mitochondrial Dysfunction and Chronic Illness

YouTube video by CoRE at Mount Sinai

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 17/12/2024

Todd Davenport's #UniteToFight2024 Vortrag gibt es nun auch mit deutschen Untertiteln. @sunsopeningband.bsky.social Herzlichen Dank an Ruth Brannan @flowerkraut.bsky.social für die Übersetzung und @annette121020.bsky.social fürs Korrekturlesen! 🙏

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Ruth Brannan @flowerkraut.bsky.social · 12/12/2024

‚Inconvenience’ does not describe the appalling lack of medical care for this patient with severe ME by their NHS Trust. #pwME #pwLC #longcovid #severeME www.bbc.co.uk/news/article...

bbc.co.uk

Bedbound Scarborough woman facing 40-week wait to see specialist

Deborah Seymour says she has

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Mark Faghy @profmarkfaghy.bsky.social · 09/12/2024

The words you choose and how you use them matter. We try hard to get it right and our PPIE reps have provided such valuable insight into all of our patient facing and study training materials. No doubt we will get it wrong sometimes but we will always correct ourselves if that is the case.

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Harry Eccles @harryeccles.bsky.social · 28/11/2024

Repost if BlueSky is now your primary social media site.

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Putrino Lab @putrinolab.bsky.social · 30/11/2024

I’ve been seeing some classic Monday morning quarterbacking as the necessity of #COVID19 lockdowns are being discussed once again. As usual, we’re seeing a lot of hyperbolic statements and attempts to create conversations around comparative suffering which is always just a 1/

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Hannah Ritchie @hannahritchie.bsky.social · 20/11/2024

It's only right that my first post here is sharing Scotland's map of named ice gritters. You can follow where they all are in real-time. Some favourites this year: Sir David Attenbrrrrrr Stone Cold Steve Frostin Lord Coldemort You're a blizzard, Harry www.traffic.gov.scot/gritter-trac...

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Putrino Lab @putrinolab.bsky.social · 20/11/2024

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 1/

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Niall Harbison @niallharbison.bsky.social · 14/11/2024

I post a lot of good news about dogs on Twitter but A lot of people asking to also post here now. Struggle to find the time but if I get over 20k followers here I'll find a way to post daily. 🎤 Mic check. Is this thing on?

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