
Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) #POTS #MCAS & her ME advocate spouse/caregiver. Before: Architect, software interaction designer.
United States
Joined October 2015
- Tweets29.8K
- Following3.1K
- Followers1.6K
- Likes93.1K
M. and S. Shaw retweeted
General Motors collected data on its customers’ personal driving habits without their knowledge and then sold it, potentially affecting their rates.
Now, my office and a bipartisan coalition secured $220 million from @GM and stopped this illegal violation of drivers’ privacy.
M. and S. Shaw retweeted
Replying to @KaizenMayDay @amaticahealth
Anyone can join. Especially pre covid ME. We have a questionnaire you will do to capture info
M. and S. Shaw retweeted
My whole research career has been founded on patient partnership as a cornerstone. When people want to know why patients weren’t consulted on a trial when they have several voting seats on the governing board and an ME charity as a funder, I think we should consider a few items.
Thank you to those who quickly alerted me and to the @nycbirdalliance and @nysdec for taking action to get the workers to stop immediately.
Unfortunately, the damage is already done. The owlets inside were flushed out, which was certainly a frightening experience for them. At least one is roosting fully exposed. They are capable of flight but may not yet capable of finding appropriate roosts (other than the original nest). They will need to learn fast. The owlets also cannot hunt for themselves yet and were still being fed on the water tower by their parents. In addition to experiencing dangerous short-term stress, their remaining development may be altered by this sudden change.
Hoping for the best for this family. Animals can be so resilient in the face of all the challenges people throw at them. And perhaps everything will be fine for them in the end.
Nevertheless, this work probably broke federal and state law and those accountable should answer for their actions.
Photo from a couple weeks ago showing four of the five (maybe six) owlets lined up together. Happier times.
M. and S. Shaw retweeted
So let me get this right: if you’re a corrupt right-wing leader who loses an election and is under investigation you get asylum?
If you’re a mom and kid fleeing violence you’re not?
M. and S. Shaw retweeted
Dear Director Patel @FBIDirectorKash,
In 2024 I sat in Alon Alexander’s mansion in Miami Beach with the brothers, their father, the rest of the family, and a disbarred attorney who went to federal prison for helping drug traffickers obstruct justice, and I was told it was gang initiation time.
My target was Evan Torgan, the attorney representing the women who had come forward against Oren, Tal, and Alon Alexander. The family believed Torgan was being paid to orchestrate the women and extort them. I was asked what my connections were to the FBI and the Department of Justice. Oren told me they had already hired another private intelligence operative to gather information on the women. They could see an indictment coming.
The disbarred attorney was Samuel Burstyn. He served 42 months for conspiracy to obstruct justice on behalf of a drug trafficking organization. That is when I stopped thinking of it as an intelligence job and started thinking about what could physically happen to Evan Torgan.
I said no. I called Evan Torgan and warned him. Then I contacted the FBI, told your agents what I had seen, and handed over every electronic communication between me, the brothers, and the family. That is part of what I heard in that house. I am leaving out the rest on purpose, because I will not put anything in public that could hurt an investigation.
Yesterday the brothers were sentenced to 30 years each. Judge Caproni called what they did monstrous. She was right. But that sentence closes only half of this case.
The other half is in the Peacock documentary The Wolves of Real Estate: The Alexander Brothers, and I did not understand its full extent until I watched it. The film reports that a victim was told by an investigator that her children had been mentioned. Victim 4 dropped out.
Director Patel, that is not crisis PR. That is not intelligence gathering. That is a woman who reported a rape being told that someone knows where her children are. I believe it was witness intimidation, and I believe it was criminal.
I am asking you to open an investigation into the PR firms, the investigation agencies, and the individual investigators who were paid to target, discredit, and intimidate these women and their lawyer, and where the evidence supports it, to charge them.
I am also asking you to widen the case. Oren told me about other billionaires. He told me about a victim being held in a dungeon in a billionaire’s house in the Hamptons. I cannot prove what he said. You can. The brothers did not operate alone, and I believe there are more victims who were silenced by exactly this machinery. The people who helped this family, protected it, and hunted its accusers should not get to watch the sentencing on the news and go back to work.
These women did their part. They spoke, and they were hunted for it. The brothers who raped them got 30 years. The people who hunted them got paid.
Fix that.
Respectfully,
Everett Stern
HSBC Whistleblower
Founder and Intelligence Director, Tactical Rabbit
M. and S. Shaw retweeted
Transparency in the process of clinical trial design in ME will allow us to learn from and build on our past (collective) experiences and mistakes instead of hide them, and this progress potentially gives patients new reasons for hope. Much better than being left with conjecture.
M. and S. Shaw retweeted
I think the path toward understanding how decisions are made in clinical trial design in ME and ME-like conditions is making public the minutes from meetings involving the stakeholders. Somebody should be organizing things and taking notes. Transparency is key.
M. and S. Shaw retweeted
Plenty of people need to hear this: please stop using the DSQ-PEM as the only way to measure PEM in ME, Long Covid, and other conditions. It is not the way the questionnaire was intended to be used. Just because it's easy, doesn't mean it correct.
You are making me lose my mind.
M. and S. Shaw retweeted
Hey @Meta 👋 We are currently hosting a get-out-the-vote rally in Osceola County, home to a large Puerto Rican community, and our #LatinosConAngie @Instagram page was suddenly taken down while we were actively posting content from the event.
This page is a critical communication tool for reaching Latino voters and mobilizing our community. With just seven days until Election Day, every minute matters.
We are calling on Meta to immediately restore the page and provide an explanation for its removal. Voters deserve access to critical election information, especially in these final days. @andymstone
M. and S. Shaw retweeted
reading the me/cfs and long covid research often leaves me like
M. and S. Shaw retweeted
Don't underestimate the role of regulators and sponsors in creating suboptimal trial designs in ME/CFS and Long COVID. Scientific problems don't always come from the science.
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.
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
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?
























