Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) #POTS #MCAS & her ME advocate spouse/caregiver. Before: Architect, software interaction designer.

Joined October 2015
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Have you ever wondered what the difference is between post-exertional malaise (PEM) & post-exertional symptom exacerbation (PESE) in myalgic encephalomyelitis (M.E.)? @sunsopeningband explains it in a clear and elegant nutshell.
PESE = symptoms worsen with exertion, says nothing about latency between onset and stressor nor recovery period PEM = delayed symptoms after stressor, prolonged recovery PEM is an energy problem. Signs/symptoms also may coincide with dysfunction in a number of other systems.
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De Niro: I hate to say it, but loving our country is starting to sound like an abused spouse saying they love their abuser. I can’t love a country that starts stupid and inhumane wars, killing thousands of innocents and indirectly causing the deaths and suffering of millions more. I can’t love a country that takes healthcare away from millions of people and uses that money to enrich their pals in the Trump-Epstein class. I can’t love a country that sends out masked militias to shoot citizens in the streets, torture our neighbors, and separate families. I can’t love a country that’s led by a racist, misogynist, xenophobic tyrant. And let me just say it: I can’t love a country that’s led by Donald Trump and his sycophant Congress.
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Replying to @sibylle_berlin
Eine schockierende Todesursache muss noch hinzugefügt werden: ☠️☠️☠️verhungern☠️☠️☠️ Melanie, Maeve, Celine und andere #MECFS Kranke verhungerten, weil lebensrettende Hilfe in Form von künstlicher Ernährung/Port verweigert wurde!💔
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While millions knew Carl Sagan from television, his students at Cornell University experienced his philosophy firsthand. He famously taught an undergraduate introductory seminar where the entire grade depended on challenging assumptions. The unwritten rule was simple: students could earn an “A” for completely disagreeing with Sagan on a scientific or philosophical point, provided they used strict empirical logic to support their claim. The lesson was intellectual humility. Sagan would deliberately present a convincing but flawed scientific argument, wait to see who blindly accepted it because of his authority, and then dismantle it to show how easily the human mind can be swayed by a famous title or confident delivery.
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Now allegations of gross mismanagement and financial malfeasance at the Kennedy Center, on top of the failures of due diligence by the Center's Trump board already found in court. When does it stop?washingtonpost.com/style/202…
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Anything but novel & inspiring science. RECOVER have to be the least ambitious group I’ve ever seen. You’ll never achieve great gains if your ideas are just recycled failed concepts. The leaders of RECOVER are dinosaurs & medical progress has left them behind.
RECOVER-ENERGIZE will test 2 Long COVID strategies based on PEM status. Rehab for exercise intolerance without PEM and structured pacing for PEM, with safeguards to avoid exertional harm. medrxiv.org/content/10.64898…
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This isn’t the first time they’ve done this. They killed a disabled, blind Rohingya refugee by leaving him outside in the cold without his cane or his cellphone. Both cases were ruled a homicide. It’s death by neglect & abandonment and they must be held responsible.
ICE took a 31 y/o Haitian asylum-seeker into custody, drove her 30 miles away to a Pittsburgh office, put an ankle monitor on her, then sent her out the front door with no way to get anywhere or contact her family. She froze to death at a bus stop. It's now ruled a homicide.
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“We are deeply disturbed to learn so many senior members of the Trump administration gathered in the Situation Room to discuss the release of the Epstein Files as a reputational problem… we are separately concerned Todd Blanche was at that table.”
Letter from Epstein Survivors
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Long Covid Cases Hidden By Widespread Preference For Literally Any Other Diagnosis
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🎨 David Hockney, 1971 - portrait of Sir David Webster sitting in an iconic Mies van der Rohe chair, next to a vase of pink tulips (Webster famously ran London’s Royal Opera House in Covent Garden from 1945->1970 & played a key part in the establishment of the Royal Ballet
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Notice how almost EVERYTHING inside Obama’s Presidential Center bears someone ELSE’S name: The Eleanor Roosevelt Garden The Nancy Pelosi Pavilion The Nelson Mandela Skyroom The Ann Dunham Water Terrace The list goes on… REAL leaders don’t feel diminished by sharing the spotlight 💙
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NEW Trump has now opened all five U.S. marine national monuments to commercial fishing, ending long-standing fishing restrictions across millions of protected ocean acres. Conservationists warn the move puts habitat for whales, sea turtles, sharks, and coral reefs at risk. 🚩
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"So scientists took millions of Katie's own T cells and genetically modified them in the laboratory. Their targeting mechanism was changed so now they attack B cells and these are put back in the body." How many will have access to this treatment?
'I've never been this good' – revolutionary immune reset puts lupus in remission ➡️ bbc.in/3QyIarc
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One document is all it took to put uranium drills on the Continental Divide Trail. Not a vote. Not a public hearing. Not an environmental review. One filing. Because under a law signed by Ulysses S. Grant in 1872 — written to strip-mine the West during the Gold Rush — any company can stake a claim on federal public land, and the burden falls on the government to prove harm. The company just shows up. Gamma Resources Ltd. showed up in February. Out of Vancouver. $29 million in debt. Zero revenue from operations. Their own auditors have flagged them as a "going concern" — which in financial terms means: we're not sure this company will survive. They've changed their name twice in just over a year. And now they have a legal pathway to drill 12 uranium boreholes — up to 500 feet deep — into New Mexico’s Carson National Forest. Directly on the Continental Divide Trail. In the Chama Basin — the headwaters of the Rio Grande’s largest New Mexico tributary, a watershed that supplies drinking water to over half of New Mexico’s population. More than one million people. Twenty-three tribes and pueblos. Acequia farmers who have drawn clean water from this basin for over 400 years. Families on shallow wells with no alternative water source. They've already identified nearly 3 million pounds of "yellowcake" uranium in the ground. They want to start mining by April 2027. They put it in writing, in their own investor pitch: New Mexico’s land is “low-hanging fruit”. This isn't a loophole. This is the door that was never closed. The General Mining Act of 1872 still governs hardrock mineral rights — including uranium — on 350 million acres of American public land. Under it, foreign companies can freely prospect on land held in trust for every American, extract minerals worth billions, pay zero royalties to the government, and aren't even required to disclose how much they take or what it's worth. It has never been fundamentally reformed. Not once in 154 years. The 1872 Mining Act itself requires no reclamation bond. Zero. No legal requirement to guarantee cleanup. No financial assurance that the land will ever be restored. Nothing. The current administration's "Energy Dominance" orders made it worse — declaring uranium a national priority and signaling to the industry that federal land was open for business. Gamma Resources did the math and liked what they saw. New Mexico's entire congressional delegation has demanded a full environmental review and is drafting legislation to withdraw the Chama watershed from all mineral development. The Continental Divide Trail Coalition has raised the alarm. The Forest Service still hasn't decided if this even requires a full review. A 154-year-old law. A foreign company with no revenue. A watershed tended for centuries by people who were here long before any of this was possible. How is a law written for the Gold Rush in 1872 — still deciding the fate of our Public Lands in 2026? #DemsUnited
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UnitedHealth continuously denied rehab care for seniors on Medicare Advantage recovering from surgery. But when patients appealed, they reversed 99.7% of denials. So they knew the denials were wrong, they just hoped people wouldn't fight back. That's a predatory business model. No more profit-driven claim denials: we need Medicare for All.
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If you've ever caught a snake in the yard and driven it a few miles away to set it free somewhere "better," your heart was in the right place. But that drive may be the thing that kills it. A snake knows one patch of ground intimately: where to hide, where to hunt, and where to survive the winter. Drop it into unfamiliar territory and it loses all of that at once. Studies tracking relocated snakes have found sharply higher death rates, sometimes around 50% higher. The kindness backfires. The good news is the right move is easier than the drive. Most snakes are just passing through, and if you leave them alone for a day, they'll move on. If one truly can't stay, like one that wandered into the garage, guide it outside and release it into nearby cover at the edge of your property. A few yards is fine, but a few miles can be deadly.
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🚨 The Nashville Zoo is asking for the public's help fighting a new 69,000‑sq‑ft data center that could disrupt endangered species’ breeding programs with constant noise, lights, & 24/7 industrial activity. 397K people have already signed the petition.
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“When our genes could not store all the information necessary for survival, we slowly invented brains. But then the time came, perhaps ten thousand years ago, when we needed to know more than could conveniently be contained in brains. So we learned to stockpile enormous quantities of information outside our bodies. We are the only species on the planet, so far as we know, to have invented a communal memory stored neither in our genes nor in our brains. The warehouse of that memory is called the library. A book is made from a tree. It is an assemblage of flat, flexible parts (still called ‘leaves’) imprinted with dark pigmented squiggles. One glance at it and you hear the voice of another person - perhaps someone dead for thousands of years. Across the millennia, the author is speaking, clearly and silently, inside your head, directly to you. Writing is perhaps the greatest of human inventions, binding together people, citizens of distant epochs, who never knew one another. Books break the shackles of time, proof that humans can work magic.” — Carl Sagan
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🚨BREAKING: @POTUS just opened three marine monuments to destructive industrial fishing. These areas are vital for protecting whales, sea turtles, sharks, and sensitive ocean ecosystems. This is an egregious attack on our public waters. #ProtectOurOcean #MonumentsForAll 🌊
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BREAKING: In a shocking maneuver, Senate Republicans just BLOCKED a Democratic effort to BAN federal troops from entering polling stations or seizing ballots or voting machines. Makes you wonder what they’re planning this November…
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