erinmarilee.bsky.social
ME/CFS since 2001 | Passionate about improving med ed, increasing access to care, and finding a cure | Faith, Hope, Love
62 posts
142 followers
194 following
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Imagine if RFK Jr is allowed to PACE-ify measles, cancer, ADHD. People need to know how long it takes to undo the damage of bad “science”, how many bodies get crushed, how high the cost to right wrongs. #JohnVsJonVsME, #GreatestMEdicalScandal. Don’t let them do to you what they did to #ME
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Commenting so I remember to read tomorrow when my brain is working because I know a number of people in Alabama who suspect IACCs but can’t find a knowledgeable doc.
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I love your sparrow posts! I’m also almost housebound with moderate #MECFS and just picked up birdwatching. We have several white-throated sparrows living in our yard for winter and I love to watch them!
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I think this is what’s so painful. We are so close. The science has progressed. Drugs already exist for most theories of the disease. Just a little bit of funding for a few key researchers and millions of people could be lifted out of this daily suffering. Just so close.
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Random internet hugs help a lot. Thank you. 💗
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Amazing! Thank you!
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Wait, where can I buy that print? I love it!
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Oh my gosh I love this! Thank you for using your precious energy to write it! It’s nice to hear that even in our weakness, we have a reputation for being bold and fearless and protectors.
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Ooof. I do not envy that. Good luck!
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Came here to second this!
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For the last few days I’ve been playing the game is it migraine, PEM, or utter despair? But then I started seeing gold sparklies out of my left eye and lost my balance, so excellent news! It’s migraine! The easiest option of the three! Sending you lots of crash love and permission to rest!
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Hooboy, flashbacks to the year I spent as an exchange student in a less well known part of China and some administrative things got messed up on the American side and what a stressful experience that was. So much love to people trying to figure things out.
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Ohhh so that’s why I told my husband I want to go to Japan to see the monkeys in the snow that hang out all day in… uh… hot tubs for nature?
Him: you mean hot springs?
Me: doh! Yes!
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Thank you, Maggie! I told my husband, “I think I made people feel better.” And he was like, “How? You’re a ball of utter despair right now.” Me: “Well I just told everyone things are really bad, bigger than our abilities, and we’re just going to keep doing good anyway. I feel better.” 🤷♀️
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Here you go! dredf.org/wp-content/u...
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Yes. This will be the focus of today’s ME Action Georgia advocacy meeting. We are joining a letter writing campaign and there is a protest in Atlanta next week. Let me go grab a link with an explainer of where the case stands right now.