My thoughts about the film Complicated, with children who have EDS/hEDS, where they and their families are not being take seriously. With child protective services as a result. Medicine needs to do better! www.facebook.com/share/p/1XDf... #EDS #hEDS #pwme #myalgicE #millionsmissing

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The bit about accusations of "being afraid of movement" hit especially hard. I spent years and thousands of dollars desperately trying to maintain my pre-illness levels of activity and instead did permanent damage to my health. People who assume I'm just lazy or scared are only telling on themselves

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I can relate to a lot in this article. Being stubborn has helped me stay alive & I can't stay silent in the face of so much unnecessary suffering.

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Wie komt er 25 oktober naar de #PAIS-wake om de politiek op te roepen eindelijk een einde te maken aan de decennialange verwaarlozing en mishandeling van mensen met een #PAIZ? Jullie hulp is gezien de schrijnende situatie waar mensen in leven dringend nodig. See you there?!

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Beth Dobbin on being bedbound, Anil van der Zee on suicide, and patient vs doctor knowledge... virology.ws/2026/10/19/t...

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