Fighting for women's health equity, #MEAction board, #MillionsMissing, #pwme

San Francisco & Occidental, CA
Joined November 2006
If you think I talk about it a lot (IRL), it’s often out of necessity. I don’t bring it up to be annoying or make excuses. This is my reality.
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They also are so severe since getting “the big sick” that they affect EVERY SINGLE ASPECT of my life.
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me being negative. This is my reality. Likely for the rest of my life unless a HUGE miracle occurs or a cure for a GENETIC illness is found.
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Y’all. My mind just exploded.
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Congrats to @jenbrea I concur, @unrestfilm is very special.
Yay! @unrestfilm included as one of “Top 10 Netflix Documentaries Directed By Women, Ranked According To IMDb” screenrant.com/best-netflix-…
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#MEAction volunteers and staff just met with the CDC! There is much to report, but now we will rest. We prepped so hard to make this meeting as productive as possible and it paid off! The meeting was productive, with more follow up engagement to come. #CDC #mecfs #COVID19 💪✌️
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My read is that Trump is losing every woman in America. We have all dealt with this guy.
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To quote a friend “as if Covid wasn’t enough”
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In our 30s, Mark and I both contracted a bad virus. We both recovered, but not completely. He was left with Type 1 Diabetes, I with ME. Please bear in mind that while you might not die of COVID-19, it might damage your health for the rest of your life. meaction.net/2020/05/10/rese…
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“This is our chance to define a new version of normal, a rare and truly sacred (yes, sacred) opportunity to get rid of the bullshit...” from Prepare for the Ultimate Gaslighting* by Julio Vincent Gambuto link.medium.com/dDrDw866C5.
this! i’m getting torn between 2 conflicting states 1) everything’s more accessible! i can do courses/chat/work & I’ve had more remote social contact this week than in years! Yay! 2) everyone’s spent less than a week living my daily life & is losing their minds. oh, that hurts
Such an odd time to be chronically ill: you’re more restricted than ever but also life has never been more accessible. Remote working is the norm. Friends groupchat. Musicians stream concerts. Media give tips on isolation. Suddenly everyone‘s housebound and the world has adapted.
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Jennifer Brea is the 2019 recipient of the Invisible Disabilities Association’s first ever Media Impact Award. She brought visibility to people with #MECFS with the international award-winning documentary film Unrest. Congratulations! invisibledisabilities.org/se…
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Replying to @DrMaureenHanson
Wow “In more than two dozen interviews, scientists whose ideas fell outside the dogma recounted how, for decades, believers in the dominant hypothesis suppressed research on alternative ideas:They influenced what studies got published in top journals, which scientists got funded”
This article is a cautionary tale for any disease whose etiology is unknown, including ME/CFS. When I review a grant proposal with a novel hypothesis, I remind myself that I do not own a crystal ball. statnews.com/2019/06/25/alzh…
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