Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) #POTS #MCAS & her ME advocate spouse/caregiver. Before: Architect, software interaction designer.
United States
Joined October 2015
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- Following3.1K
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M. and S. Shaw retweeted
Hier ben ik nou echt ziedend om.
De allerziekste PAIS patiënten lijden in een donkere kamer en dat is hun hele leven. Er is geen zorg, niemand komt maar ze toe, geen poging om iets aan hun lijden te verlichten. Jaren of decennia. Alleen euthanasie en overbelaste mantelzorgers.
Minister: turven.
Meerderheid: prima.
Ze scheeuwen stil om hulp, in de media, bij elk zorgloket dat njet zegt. Van die hulproep worden ze zieker.
En als er dan eindelijk iemand langs komt, gaat die niks doen, maar vragen of ze die hulproep nog even kunnen herhalen: is die pijn mild, ernstig of zeer ernstig? Ben u depressief een schaal van 1 tot 10? Ik heb nog 47 vragen mevrouw.
Je moest eens weten hoeveel vragenlijsten deze mensen al gehad hebben ter vervanging van zorg.
En dan? Neemt de minister dan wèl actie om een mobiel team op te richten, of moeten de zorgpartijen het zelf weer uitzoeken? De zorgpartijen die het tot nu toe ook niet hebben gedaan voor deze mensen, die aangeven bureaucratisch klem te staan bij PAIS.
Voor de partijen die tegen stemmen. Daar zijn vast procedurele redenen voor. Maar @wendel_hilde @andre_poortman @MarijkeSynhaeve @Eerdmans @Rene_Claassen71 @FemkeMarijeW: Wat doen we dan wèl, voor de allerkwetsbaarsten?! Nu liggen ze zonder zorg te creperen.
M. and S. Shaw retweeted
Protest tomorrow in front of Norwegian parliament over issues related to the upcoming national guidelines for "long-term fatigue": virology.ws/2026/10/27/trial…
M. and S. Shaw retweeted
#DearAndy
💌 In case you missed our letter to Andy Burnham we asked him for 3 ACTIONS to give people with Long Covid & ME hope
🖇️ to letter below 👇1/4
ALT Long Covid Advocacy graphic with a navy background, pink-to-blue gradient stripe and three requests to Andy Burnham: fully fund the £20 million Sequence ME and Long Covid research project; commission a national NHS service providing specialist and home-based care for severe and very severe ME; and establish a parliamentary Select Committee inquiry into historical and ongoing failures in ME healthcare, with consideration of a subsequent statutory public inquiry. LCA logo at bottom right.
M. and S. Shaw retweeted
Alex Pretti's father: Our son was shot and killed by the government, federal immigration agents, on January 24th, 2026. We learned about his death from the media as we saw him being shot repeatedly in the back after helping a woman from his community. This was not a protest that Alex was at. His hands were in the air, and his face was on the ground when he was executed by ICE agents. We know exactly what our eyes saw. No one from the federal government called us on that day. But they did go on TV to tell lies about Alex. No one has called us since. No one has recanted those lies.
M. and S. Shaw retweeted
May be of interest to #pwLC #pwME Kell, D. B. & Pretorius, E. (2026) Evidence for the Causal Involvement of Homocysteine in Long COVID and ME/CFS. Preprints. 2026, 2026102574. doi.org/10.20944/preprints20…
M. and S. Shaw retweeted
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.
ALT Screenshot of Duckworth’s letter to the leadership of both the U.S. Senate Committees on Energy and National (ENR) Resources and on Environment and Public Works (EPW), Page 1
ALT Screenshot of Duckworth’s letter to the leadership of both the U.S. Senate Committees on Energy and National (ENR) Resources and on Environment and Public Works (EPW), Page 2
ALT Screenshot of Duckworth’s letter to the leadership of both the U.S. Senate Committees on Energy and National (ENR) Resources and on Environment and Public Works (EPW), Page 3
ALT Screenshot of Duckworth’s letter to the leadership of both the U.S. Senate Committees on Energy and National (ENR) Resources and on Environment and Public Works (EPW), Page 4
M. and S. Shaw retweeted
Elon Musk has spent more money on American elections in the last two years than George Soros has in his entire life.
M. and S. Shaw retweeted
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?
M. and S. Shaw retweeted
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
M. and S. Shaw retweeted
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
M. and S. Shaw retweeted
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.
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
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/
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.
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
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
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.
