jonathan (pwME)

jonathan (pwME)

crumpledleaf.bsky.social

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

👤 Joined on 28 August 2023

48

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44

Following

33

Total Posts

📜 Kullanıcı Geçmişi

  • 28 Ağu 2023, 19:24
    🎉 Bluesky'e katıldı - İlk kullanıcı adı: @crumpledleaf.bsky.social
  • 13 Kas 2023, 16:55
    🔄 Profil bilgileri güncellendi

❤️ Beğendiği Gönderiler

Me and Flapjack kicking it in the recliner.

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Me and the grandson.

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There was also a XMRV discussion thread on Bad Science forums which became so toxic even for BS forums that it was closed down. That toxicity partly spilled over into the thread on the PACE trial, where critics of the PACE trial were typically insulted and ridiculed for questioning it.

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(4/5) Years of neglected suffering clearly drove the anger and suspicion that made public discussions turn ugly when replications were negative and implied to dismiss the biological nature of ME/CFS in general. Then the PACE trial results came out in early 2011 which added another layer of triumph.

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(3/5) Many in the ME/CFS community were not sold yet about XMRV, I remember not wanting to spend too much time on it until it was replicated, but for some it was understandably the possible answer they were looking for that tied everything together.

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