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

United States
Joined October 2015
M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
“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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
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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M. and S. Shaw retweeted
I believe this will be considered one of the most important videos in US history from this time.
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M. and S. Shaw retweeted
Replying to @GretchMick
Im apart of the UCSF trial in San Francisco. The Los angeles one i was told I was apart of, just needed the final screening has been delayed for the last year and still has no resume date. So i reached out to UCSF and made it into their trial. I get two injections of Anktiva 2 weeks apart with 5 follow up visits over 75 days. Its only Anktiva! I know the Los Angles site is allowing up to 8 doses i think but this UCSF trial is capped at 2. As much as i wish i was getting more, there has to be some reason why they kept it at 2 at UCSF. They are one of the top Long Covid researchers in the world so im grateful/trust that the 2 doses will provide relief for Long Covid
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The recirculation "feature" in cars is extremely dangerous. It increases risk of SARS-CoV-2 transmission immensely in rideshares. The CO2 level itself also promotes drowsiness and cognitive dysfunction, risk factors for accidents. If you have a CO2 monitor, use it while driving with recirc on for 15 mins. You will not be able to unsee the result, and I doubt you will ever do it again.
The age-old question still stands: which car is trying to suffocate you the most? We're on a mission to find out. First one - the EV.
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M. and S. Shaw retweeted
⚠️ TEXAS VOTER ALERT: Multiple voters in Bexar County report touchscreen voting machines switching their selections from Democrat Gina Hinojosa to Republican Greg Abbott and from Democrat James Talarico to Republican Ken Paxton, with some voters having to correct their choices repeatedly, according to KSAT. Election officials blame likely touchscreen sensitivity or user error and say they’re investigating the complaints. No deliberate tampering has been established. CHECK EVERY SELECTION AND YOUR PRINTED BALLOT BEFORE CASTING IT. If anything is wrong, alert a poll worker immediately. Once your ballot is cast, you cannot correct it.
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M. and S. Shaw retweeted
"Stop calling us 'PAIS patients.' Patients receive care. We are left to fend for ourselves." Good point.
Wat goed al die media aandacht voor PAIS vandaag!!! 💙 Ik zie wel een dingetje dat ik persoonlijk anders zou doen: Stop met ons 'PAIS-patiënten' te noemen. Patiënten krijgen zorg. Wij niet. Wij zijn mensen die PAIS hebben en aan hun lot worden overgelaten. Geen patiënten.
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The scrambled eggs at a hotel breakfast are 19% water, and they're dyed. A lot of hotels and cafeterias pour them from a carton of Papetti's Breakfast Blend. The spec sheet reads whole eggs, 19% water, then under 2% of salt, xanthan gum, citric acid, annatto color and natural butter flavor. Papetti's is part of Michael Foods, one of the biggest egg processors in the country. Every ingredient has a job on a steam table. Xanthan gum holds the added water in the egg so it doesn't weep into the pan. Citric acid keeps the eggs from turning gray or green under a heat lamp. Annatto puts back the yolk color the water washed out. The butter flavor is there because nobody is going to add butter. The carton keeps for 98 days in the cooler. The plain version from the same company is whole eggs, whey, skim milk, xanthan and citric acid, with almost no added water and half the sodium.
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