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

United States
Joined October 2015
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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Trump admitted he blocked energy funding to punish blue states he lost in 2024, including $586 million for Illinois. Courts ruled it illegal. He's still blocking the money. Bipartisan permitting reform won't work if Trump ignores the law. He must reinstate the grants first.
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Elon Musk has spent more money on American elections in the last two years than George Soros has in his entire life.
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Replying to @mecfsskeptic
I'm mostly annoyed by the Post-COVID-19 fatigue syndrome (PCFS) naming. I mean these researchers should know what CFS caused. Why do the same with LC?
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Armed federal agents aren't allowed at polling places, and no one can use a badge, a weapon, or a threat to stop you from voting. Voting in New York is safe, and my office is here if you encounter any issues at the polls: 1-866-390-2992
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Much easier for the media to lock in on faux Cheesecake Factory outrage than a House Dem report indicating Todd Blanche basically told Ghislaine Maxwell "stop talking" when she was about to discuss a girl that could more closely tie Trump to Epstein
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Three Democratic female candidates for Congress have been hit by cars over the past few days. Peltola, a woman running for Congress in TN, and a woman running for Congress in OH.
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Er is echt niemand die zo goed weet hoe alles mbt politiek is gelopen als het gaat om #LongCovid als @riendebock, dus vind het geweldig dat hij nu daar als ervaringsdeskundige deze 🔥 bijdrage geeft. Het kost zoveel, nu, maar ook wat hij altijd al geeft voor ons. GO RIEN
Mijn bijdrage in de Tweede Kamer bij het rondetafelgesprek Long Covid PAIS:
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In 2024, I investigated why Biden Admin had slow-walked response to #H5N1 outbreak in dairy cows. The answer: @USDA let farmers not test cows, at dairy lobby's behest. vanityfair.com/news/story/in… Strong 🧵on evolution of H5N1 risks: "This should have ended 2 years ago." 👇
There is something really concerning (and disappointing) going on in the US right now. A dangerous and preventable situation. Let me explain. nextstrain.org/avian-flu/h5n… 1/
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Onderzoek naar Long Covid en PAIS? "heb je mijn begroting gezien, dat geld heb ik nu niet." -er stond zo'n 80 miljoen voor Long Covid op de VWS begroting 2023, veel meer dan waar nu om gevraagd wordt. -Duits onderzoek: Long Covid en ME kosten hun samenleving 64 miljard per jaar Ongelooflijk dat hier gewoon hardop gezegd wordt dat het een centenkwestie is. Ja sorry geen geld, dus we gaan honderdduizenden mensen hun toekomstperspectief ontnemen en onderzoekers wegjagen. Dit is peanuts op de VWS begroting, vergeleken met andere dingen waar over onderhandeld wordt, en vergeleken met de maatschappelijke kosten die dus nu al gemaakt worden. Vorige ministers zeiden nog dat het ontijdig was, het veld niet meer onderzoeksgeld kon gebruiken, eerst het huidige onderzoek afwachten, etc.
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This is the current funding picture in The Netherlands. Research funding is running out but the government wants to wait for a report about what research would be needed. It's unclear when new funding would then start. Delay. Delay. Delay.
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We think our event offers a blueprint that can be copied internationally. By making it a vigil, we - aimed attendance at loved ones (rather than patients) - set it apart from a usual protest - and created a beautiful and poignant moment for our community to come together. 2/7
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Yesterday we held a beautiful PAIS Protest Vigil in The Hague. We called for long-run research funding like a Decade Against PAIS. 500 people showed up, we made the evening news, were covered in the major newspapers, and had politicians attend! It was also beautiful 🕯️ 1/7
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I know that everyone is focused on Trump's attacks in California and Alaska. My team is fighting in court in both places. But the fight for free and fair elections is much broader. Elias Law Group is currently litigating 92 voting and election cases in 42 states plus DC.
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“It’s a fluctuating illness, and you can’t just take a snapshot of it and think that’s what the person’s like all the time.” Jane Colby explains why #MECFS can be so easily misunderstood on the BBC Politics Show in 2009.
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PMC estimates that US SARS-CoV-2 transmission is higher than 62% of all days since pandemic onset. We are very much #DuringCOVID. The current wave is atypical in two respects. 1) We have a pronounced double peak. The secondary rise in early October violates historical trends. 2) Real-time data quality are terrible. About 1-in-6 CDC contractor sites are offline while a contractor issue is resolved. Additionally, each of the past 6 weeks, the CDC has retroactively corrected levels upward. The magnitude and scope of the corrections are highly atypical. In each case, the corrections go back until early July. In each case, levels increase about 25-40% between the time they are reported and two weeks later, with additional upward corrections as time goes by. These are not one-off corrections, and hence, not related to the twice-annual calibration process or specific sites coming online. It's basically like a balloon is sitting under the wave, and each week, the balloon gets inflated a little more, pushing each phase of the wave higher and higher, week after week. We've added a new feature to our diagnostic systems and hope to have more insight into that soon. Expect that the wave shape may look vastly different in a couple months when the full delayed data come in. THREAD (2/4)
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In a little-noticed webpage update, the Environmental Protection Agency has announced a plan to decommission its online web archive at the end of the year, a move that would wipe tens of thousands of publicly available environmental resources from the web. motherjones.com/environment/…
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Not enough focus on the hopelessness here. People aren’t just exhausted; they’re suffering and hopeless and many are “choosing” euthanasia, while no one takes accountability.
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We’re really pleased that our MP email template has been supported by wider ME organisations via Forward ME 🫶 If you have the energy, you can help support @BethDobbin’s call for ME research funding by writing to your MP. More here 👇
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research. We are working with her to amplify her message, and you can help (if capacity allows). Write to your MP to back her call - and to make things easier, we have a template for you.👇
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I believe this will be considered one of the most important videos in US history from this time.
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