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ME/CFS Science
@mecfsscience.org

1) A short but powerful blog by Anil van der Zee: "Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇

anilvanderzee.comNot an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der ZeeI'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life. While raising awareness for ME also keeps me busy, I

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ME/CFS Science
@mecfsscience.org

2) He writes: "I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."

ME/CFS Science
@mecfsscience.org

3) "While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about."

ME/CFS Science
@mecfsscience.org

4) "It’s not a job. It’s not a calling. It’s not fun. It’s not something I’m proud of. It’s not part of satisfying some silver lining porn. It’s born out of losses, pain and suffocating necessity because at some point I would like to get better."

ME/CFS Science
@mecfsscience.org

5) "...I of course appreciate that people like things that I do, but realize I fucking hate having to do this. It’s not an enjoyable achievement for me. It’s demoralizing and exhausting."