iiinova — where your digital self keeps evolving

Reposted by jonathan (pwME)

Miranda 🌸 @crookedneighbor.bsky.social · 20h

Reminder to young adults that it is never too late to get the MMR if you were not vaccinated as a child, or you're not sure. Your PCP or local community health center should be able to run titers (blood tests that tell you if you're immune or not) and help you get any vaccines that you're missing.

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jonathan (pwME) @crumpledleaf.bsky.social · 14/10/2026

hey, Alem. so pleased by your recent improvement 🙂. i wasn’t active on ME social media before you became very severe but am glad to have your sharp intellect and deep knowledge of ME’s history, as evidenced in your response to me, back in the community’s discourse!

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jonathan (pwME) @crumpledleaf.bsky.social · 14/10/2026

no, i don’t think this one post of Whitney’s is going to amount to much harm, but this shit matters. every person who gets diverted into these dead end causes—think about how many advocacy hours the “ME is not CFS” people have wasted over the decades—is someone who could’ve actually helped.

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jonathan (pwME) @crumpledleaf.bsky.social · 14/10/2026

his conspiracy narrative reminds me of the way many patients on social media talked about XMRV in 2010. it was, they believed, undoubtedly the cause of ME, and the fact studies kept saying otherwise was due to a coordinated effort to suppress the truth. all motivated by prejudice against ME.

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jonathan (pwME) @crumpledleaf.bsky.social · 14/10/2026

as pwME, it’s important we be on our guard about conspiracy theories. if I believed Whitney about the nanoneedle, i would advocate passionately for the community pour all our time, energy, and money into its development. we might divert significant resources to that end. all likely for naught.

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jonathan (pwME) @crumpledleaf.bsky.social · 10/10/2026

she grate on my barrington until I declare (sorry to hear you’re feeling so awful ❤️‍🩹)

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jonathan (pwME) @crumpledleaf.bsky.social · 28/09/2026

can you say more? i started watching football recently but am not quite sure what you mean. also, it’s nice to see you on here! 👋 have missed your thoughtful takes about LC/ME on my timeline

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jonathan (pwME) @crumpledleaf.bsky.social · 01/01/2026

I’ve just finished my first ME/CFS video essay. It concerns what I’ve learned about hope over the course of my illness. There’s a link to a text version of the essay in the video description if that’s more accessible. youtu.be/jMiVAAzo4p0?...

youtu.be

On Hope and Chronic Illness

YouTube video by Jonathan (pwME)

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jonathan (pwME) @crumpledleaf.bsky.social · 04/11/2025

seems very premature to call this a “breakthrough” or “the new ME/CFS blood test.” pwME are due more care than this

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jonathan (pwME) @crumpledleaf.bsky.social · 22/07/2025

another day, another person with severe ME being mistreated in an NHS hospital 💔. please sign her petition for appropriate care! chng.it/JfzLXdZzzH

chng.it

Can you spare a minute to help this campaign?

Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

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Reposted by jonathan (pwME)

Matt Lazell-Fairman @mfairma.bsky.social · 19/07/2025

Plz sign and share this petition to help Dill, a severely ill pwME in UK hospital. #MECFS #LongCovid www.change.org/p/the-nhs-mu...

change.org

Sign the Petition

The NHS must take measures to STOP Dill deteriorating

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jonathan (pwME) @crumpledleaf.bsky.social · 23/05/2025

in a fairer world, there would be hell to pay for the torture and human rights abuses being visited on this poor man. this article contains a link to his fundraiser. please donate/read/share ❤️‍🩹

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Reposted by jonathan (pwME)

Yann (ME/LC) @me-cfs.bsky.social · 12/04/2025

Very Severe ME is a relentless suppression of everything it means to be human, a denial of nearly every one of the most basic instincts and desires. And where even the capacity to grieve or process that incomprehensible loss is taken away.

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jonathan (pwME) @crumpledleaf.bsky.social · 09/04/2025

@bhanlon15.bsky.social, @tomkindlon.bsky.social, @betsyladyzhets.bsky.social If it felt right sharing this article about a very severe #pwME in need, it would be very appreciated 🧡

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jonathan (pwME) @crumpledleaf.bsky.social · 09/04/2025

The subject of this article is a friend of mine. His circumstances are utterly heartbreaking and yet, somehow, he remains a warm and kind young man. It would mean something to me if you read his story.

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Reposted by jonathan (pwME)

Miles W. Griffis @mileswgriffis.bsky.social · 04/04/2025

"The Severe....recognize the depths of the pit of horror that the Very Severe may find themselves stuck in...yet by leaning over to lend a hand, we risk falling further into the quicksand ourselves." Vital op-ed by Sam Pearce in @thesicktimes.bsky.social thesicktimes.org/2025/04/04/a...

thesicktimes.org

An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases - The Sick Times

Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. Writer’s note: In this essay, I deliberately capitalize different categories of ME in ord...

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jonathan (pwME) @crumpledleaf.bsky.social · 02/04/2025

you end your explanation by saying “does that make sense?” and feel self conscious about the note of pleading in your voice. you’ve been asking this question more often lately—perhaps a sign of cognitive decline. the worry barely registers. not like you can do anything about it.

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jonathan (pwME) @crumpledleaf.bsky.social · 02/04/2025

every explanatory step you take is an act of faith. how to stay oriented when foresight and hindsight are impossible?

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jonathan (pwME) @crumpledleaf.bsky.social · 02/04/2025

you have ME and something needs explaining. you begin to talk. you know the final destination—your understanding, shared—but your working memory is too shot to devise and hold in it a route there.

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jonathan (pwME) @crumpledleaf.bsky.social · 07/03/2025

we’re both severe. our personal care assistants (paid for by the US government) handle household responsibilities and food prep as we’re too sick. we split household expenses and support each other practically and emotionally as much as we can.

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jonathan (pwME) @crumpledleaf.bsky.social · 23/02/2025

For years, my friend has relentlessly pursued help from relevant medical/social programs in Poland with no notable successes. It’s all made very difficult because ME is not recognized in Poland.

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jonathan (pwME) @crumpledleaf.bsky.social · 23/02/2025

I have a friend with very severe ME in a dire situation in Poland. He is entirely bedridden and functionally blind (he must wear an eye mask 24/7 due to light sensitivity.) On top of this, he is being horribly abused—physically, psychologically, and sexually—by his only caretaker (a family member).

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jonathan (pwME) @crumpledleaf.bsky.social · 20/02/2025

This tweet is about a friend of mine with very severe ME ❤️‍🩹. If you have any ideas, please let me know! #pwme #MECFS

a tweet which reads: “I have a blind friend with ME and other neurological issues who is being physically abused by a family member, they need access to some form of disability-friendly domestic abuse assistance in Poland/the EU. Any help welcome.”

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Reposted by jonathan (pwME)

evacide @evacide.bsky.social · 03/02/2025

Some useful Surveillance Self Defense links for people who want to lock their shit down right now: Attending a protest: ssd.eff.org/module/atten... How to Use Signal: ssd.eff.org/module/how-t... Security starter pack: ssd.eff.org/playlist/wan...

ssd.eff.org

How to: Use Signal

Download location: Google Play Store, Apple App Store System requirements: Android 5 or later, iOS 13 or later Version used in this guide: Android: 7.0. iPhone: 7.0 License: GPLv3 Level: Beginner Time...

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jonathan (pwME) @crumpledleaf.bsky.social · 26/01/2025

as someone who became homebound at 13, it’s hard to relate when pwME who got sick in their 20s lament “these were supposed to be my fun years” i feel confused: “supposed to”? then i remember ppl didn’t nesc spend their teenage years having “you’re owed nothing in life” curbstomped into them

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Reposted by jonathan (pwME)

Cheminism🏴 @atrophous.bsky.social · 21/01/2025

Hierarchies other than class are actually real. People don’t like this fact because “the 1%” is a more appealing fraction for “people who have an interest in exploiting others” compared to idk the 50% or 80% or whatever the more realistic fraction is for people benefiting from *someone’s* oppression

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jonathan (pwME) @crumpledleaf.bsky.social · 31/12/2024

and i want to read it 😬❤️‍🩹. the way people don’t want to hear anything bad about our specialists, you’d think all it took to be a good one is just believing ME is real. we deserve way more than just that—integrity, compassion, affordability vs extracting revenue from ppl likely to be struggling

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Reposted by jonathan (pwME)

BK. Titanji @boghuma.bsky.social · 29/12/2024

Science affords us the luxury of forgetting the impact of infectious diseases - In the 1st half of the 19th century 40-50% of children in US did not make it past the age of 5 - TB killed 1 in 7 people in US and Europe - smallpox killed 80% of infected children theconversation.com/infectious-d...

theconversation.com

Infectious diseases killed Victorian children at alarming rates — their novels highlight the fragility of public health today

Between 40% and 50% of children didn’t live past 5 in the US during the 19th century. Popular authors like Charles Dickens documented the common but no less gutting grief of losing a child.

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jonathan (pwME) @crumpledleaf.bsky.social · 16/12/2024

…therefore, a modest positive trend on some surveys is not proof a drug def works for a subset of us and it should be unsurprising that a drug doesn’t work given we still don’t know what the mechanism of ME is. these trials will remain extremely long shots in the dark until we do, unfortunately

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jonathan (pwME) @crumpledleaf.bsky.social · 16/12/2024

i wish everyone who comments on ME clinical trials would internalize this image. the blue line is the health scores of the placebo group in the rituximab phase III trial it shows that not only did rituximab not work, but pwME on a placebo report a modest benefit on some health surveys over time

a graph. the vertical axis is labeled “mean SF-36-PF raw scores” and the horizontal axis is labeled “time in months”. there are two lines, a red and a blue one, corresponding to the treatment and placebo groups in the rituximab phase 3 trial. there is substantial overlap in these lines—they are virtually identical—indicating no difference in how patients fared in the two groups.

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Reposted by jonathan (pwME)

ME/CFS Science @mecfsscience.org · 23/11/2024

1) Which ME/CFS studies did the National Institutes of Health (NIH) fund in 2024? We published a new blog post that briefly describes all projects. mecfsskeptic.com/nih...

mecfsskeptic.com

NIH funding for ME/CFS in 2024 - ME/CFS Skeptic

In 2024, the National Institutes of Health (NIH) will fund 25 research projects on myalgicContinue readingNIH funding for ME/CFS in 2024

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