snowypanthera.bsky.social
Animagus. Hearty but not hale. Celebrant of beautiful action. Likes bicycles. Note: The only time I post with my real name is in scientific journals.
116 posts
63 followers
123 following
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I'm so glad Signal isn't going to be enshittified
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So much this!
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🤦
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I find this paper confusing, TBH. I don't really know what it means in practise.
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Bluesky has made it easier to add alt text, but some still struggle with HOW to write alt text. Sighted users who don't rely on alt text might feel overwhelmed. They might have questions on what details to include, or how to get started. This post from Veronica Lewis is a great resource.
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It begs the question of why a non-scientist (people in the legal profession) gets to be an arbiter of what is and isn't scientific.
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I don't know, but there are many fresh insights that ME/CFS researchers can take from other fields but frequently overlook...
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Likely more of an effect than a cause of symptoms, spending less time outdoors etc. The vitamin D deficiency ranges are also widely debated and of questionable clinical value.
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Gaslighting doesn't help anyone.
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...Tagging in my post on the May 14 meeting: absolutelymaybe.plos.org/2025/05/14/g...
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Some people (like me) lactose malsorb, even if we supposedly have the lactose tolerance genes. Mine was confirmed on hydrogen breath test. My skin is much happier when I avoid lactose.
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I don't find "Acceptance & Commitment Therapy" worthwhile because nothing actually changes.
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Much of what therapists try to do is just gaslighting (including falsely teaching that their problems are due to cognitive-behavioural feedback loops) or teaching someone to simply ignore their poor quality life, when they are missing out on so much. The root cause is never touched. 2/2
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I've never met a therapist who was helpful for ME/CFS. The reality is that most mental health issues are due to unnmet human needs but those are due to underlying health and societal problems and beyond the reach of a therapist to fix. 1/2
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Exercise is currently the trigger for POTS for me. If I don't exercise, I don't experience it.
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This is incredibly sad, I miss Alem but I'm not fit to travel either.
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Yes, this needs to be a thing!!
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Articles like this is why I still hate The Guardian. I can name maybe two decent journalists who regularly publish there (you know them too). They publish so much victim-blaming establishment shite that...
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I hate the "helping the patient" narrative when placebos are usually useless. Reporting/response bias is not the same as efficacy, hence double blinding is necessary. There is a deep bias in medicine that assumes a report on a symptom scale is exactly the same as an experience of that symptom.