iiinova — where your digital self keeps evolving

I also propose @ahandvanish.bsky.social and other members of @patientled.bsky.social to discuss #LongCovid and #ME research with Jon Stewart on @weeklyshowpodcast.bsky.social

Reposted by @JohnVsJonVsME

Other specialists proposed as guests by #pwME #pwLC on IG (which I second!): Gez Medinger, @binitakane.bsky.social @decodemestudy.bsky.social @longcovidkids.bsky.social @rthm.bsky.social

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. @openmedf.bsky.social & its centers around the world are leaders in #ME and #LongCovid research & global collaboration. @janetdafoe.bsky.social can speak both about the research & #SevereME caretaking experience (and how many folks around the world have zero support from their healthcare systems).

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I also second and strongly encourage inviting David Tuller and @georgemonbiot.bsky.social to discuss #GreatestMEdicalScandal

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María Richardson @diatoma.bsky.social · 13/08/2025

Seconding also that @meactnet.bsky.social and their Scientific & Medical Outreach director @exceedhergrasp1.bsky.social would be great guests to discuss #LongCovid #ME #GreatestMEdicalScandal (including what the current political situation in the U.S. has meant for IACI advocacy and progress)

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Seconding all of these proposals enthusiastically! #GreatestMEdicalScandal

PhillyPhile215 @phillyphile215.bsky.social · 13/08/2025

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#pwME #pwLC #NEISVoid tell us what you think 👇

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Katie Klocksin, by the wayside @katieklocksin.bsky.social · 22/07/2025

Alt text for first tweet: screen shot of Bridget O’Shea’s last tweet, from handle @Bridget_OShea, at 8:29 a.m. on 7/13/25, the day before she died: I called my mom. I told her I'm afraid I'm going to die. Her response? She hung up. 😫#MECFS

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Katie Klocksin, by the wayside @katieklocksin.bsky.social · 22/07/2025

… “Indeed, no one should have the responsibility to know so intimately this daily, hourly, physical torture. The weight of it all is too much to bear.”

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Katie Klocksin, by the wayside @katieklocksin.bsky.social · 22/07/2025

From the link above, “the very idea that the NIH, NHS, and numerous health agencies worldwide have largely succeeded in burying such a longstanding humanitarian and societal catastrophe is something I don’t think I’ll ever comprehend….”

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Katie Klocksin, by the wayside @katieklocksin.bsky.social · 22/07/2025

The #GreatestMEdicalScandal has taken another person who should have been in the prime of their brilliant life. She spent so much of her last years howling for better understanding & treatment of this neglected disease. 1/ #JohnVsJonVsME www.dignitymemorial.com/obituaries/c...

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 27/05/2025

We’re sending out a #DisabilitySOS to @naomiaklein.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Naomi Klein for this” in red text. On left side, an image of Naomi Klein as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.

PhillyPhile215 @phillyphile215.bsky.social · 28/05/2025

Reposted by @JohnVsJonVsME

@ghostpanther.bsky.social #GreatestMEdicalScandal is right up your alley—coverups by the powers that be, preventing effective treatments/cures, and even a villainous knight! @emilyesfraser.bsky.social does a fantastic job of highlighting some of its worst parts! Please help us fight this stigma! 🙏

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María Richardson @diatoma.bsky.social · 28/05/2025

I’d love for @vidyakrishnan.bsky.social to look into #GreatestMEdicalScandal bc she’s an amazing health journalist & bc there’s especially limited support for #pwME in South Asia, perhaps Asia in general. @nlizaki.bsky.social can attest to the lack of care in Pakistan 💔. www.johnvsjon.com

johnvsjon.com

JohnVsJonVsME

The race to see who will cover "the greatest medical scandal of the 21st century" -George Monbiot Check out our latest op-ed in The Sick Times about how & why we started #JohnVsJonVsME People with Mya...

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PhillyPhile215 @phillyphile215.bsky.social · 29/05/2025

Check out JohnVsJon.com @ronnychieng.bsky.social and help us fight the stigma of #GreatestMEdicalScandal!

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PhillyPhile215 @phillyphile215.bsky.social · 29/05/2025

@joshjohnsoncomedy.bsky.social I am counting on you to help us fight the stigma of #GreatestMEdicalScandal so #pwME can get effective cures and treatments! Help us out 🙏

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

We’re sending out a #DisabilitySOS to @michaelkosta.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

A Lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate Michael Kosta for this” in red text. On left side, an image of Michael Kosta as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.

@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

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We’re sending out a #DisabilitySOS to @jordanklepper.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

We’re sending out a #DisabilitySOS to @amberruffin.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 30/05/2025

As a climate justice advocate sidelined by ME, it's been eye opening to see the same tactics used by the fossil fuel industry (manufactured doubt around scientific consensus, decades of delay, sacrificing lives to a violent status quo) wielded against me as a sick person. #GreatestMEdicalScandal

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PhillyPhile215 @phillyphile215.bsky.social · 29/05/2025

We need a hero @jordanklepper.bsky.social! Help us fight the stigma of #GreatestMEdicalScandal! 🙏

@JohnVsJonVsME @johnvsjonvsme.bsky.social · 29/05/2025

We’re sending out a #DisabilitySOS to @jennyhagel.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

We’re sending out a #DisabilitySOS to @ronnychieng.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

We’re sending out a #DisabilitySOS to @GKuhlenschmidt.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 28/05/2025

We’re sending out a #DisabilitySOS to @JoshJohnsonComedy.bsky.social!Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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PhillyPhile215 @phillyphile215.bsky.social · 28/05/2025

Please help us @vidyakrishnan.bsky.social to fight the stigma and misogyny of #GreatestMEdicalScandal, so #pwME can get effective treatments/cures! 🙏

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PhillyPhile215 @phillyphile215.bsky.social · 28/05/2025

Please help us @naomiaklein.bsky.social 🙏 We need to fight the stigma and misogyny of #GreatestMEdicalScandal to get effective treatments/cures for #pwME!

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 27/05/2025

We’re sending out a #DisabilitySOS to @chenchenwrites.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth

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@JohnVsJonVsME @johnvsjonvsme.bsky.social · 27/05/2025

We’re sending out a #DisabilitySOS to @ghostpanther.bsky.social! Will you help us raise awareness about #GreatestMEdicalScandal & bring #MillionsMissing back to safety (and life)? 🙏🛟 Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth