Anil van der Zee

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• Rachel Fairbank@sweetsciencewriter.bsky.social01/11/2026 01:53

  “Nothing that the disease has thrown at me has been as difficult as the fear and uncertainty of the gruelling pre-diagnosis period.”

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• Siebe@siebepersists.bsky.social01/11/2026 01:52

  Most of the PAIS disease burden is ME. We need to communicate that better. I'm really glad about all the media attention for PAIS in the Netherlands right now, and glad that ME is being mentioned more and more often. (Thread transposed from Dutch) 1/10

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• Matt Lazell-Fairman@mfairma.bsky.social30/10/2026 16:16

  My dad lives in a nursing home 5 miles away. It’s been a year since I was well enough to visit and since my relapse it seems quite possible I’ll never see him in person again. #MECFS

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• Fen van Rhijn, MD@fvrhijn.bsky.social30/10/2026 16:16

  A long time ago, on a website now owned by a fascist, there was a wonderful and supportive community of patients, doctors and researchers, and people who were a bit of each. We'd have insightful discussions on ME pathophysiology, the latest research papers and clinical trial methodology. 🧵

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• Fen van Rhijn, MD@fvrhijn.bsky.social30/10/2026 16:16

  And of course, we're working on better outcome measures. I really hope that this labor of love that was mostly written in bed, can help push research and clinical care into the right direction. Link to the paper: www.frontiersin.org/journals/pub...

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• ME Vereniging Nederland@meverenigingnl.bsky.social

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