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jonathan (pwME)

@crumpledleaf.bsky.social
45 followers 44 following 27 posts

he/him. i sometimes write about living with ME/CFS.

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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.
A post on X (formerly Twitter) made on October 13, 2026 by Whitney Dafoe. It reads:

“Look no further than the Nano Needle.  The researcher at Ron's lab who invented it spent years working on it, came up with a diagnosic test that was super accurate, actaully highly *unlikely* *not* to work, was so cheap to manufacture we could have had it in every lab around the world and thus could have diagnosed every single ME/CFS patient worldwide in a short time.  It was brilliant.  And NIH would not fund it for baffling (or disgusting) reasons and it kind of ruined his career. He's now at another university trying to start over when he should be famous for changing the world.  

Anyone else want to sign up for a field of research like that?  Any takers?  You get kicked to the curb for a brilliant invention that would completely change the world and save millions of lives. 🤦😨🤬”
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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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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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