Winterish

I’m rewatching MasterChef Season 3, watching Christine Ha, the first blind contestant, overcome all the challenges her autoimmune disease handed her, including the loss of her vision. It got me thinking about my own disability and limitations. I’m a positive person, and this is not my first run-in with illness; I’ve had cancer twice. But this is the first time in my life that no amount of internal strength or fortitude will change the direction of what’s happening to me. I don’t know how to overcome this because I still don’t even know what’s happening to me. And neither does anyone else, half a decade later. So, if I seem short, blunt, or overly critical of the people who are supposed to represent us, I just want you to know that it comes from that place: the prison of no longer being in charge of my own destiny, the heavy realization of everything this illness has taken from all of us, and having a torturous front row seat to how much it has enriched the lives, relevance, or wallets of other. It’s like… they’re trading my hugs with my grandchildren for their self-importance, likes on social media, and job security. I truly don’t think any of us are angry **enough**.

@CostOfNukes @Dfrizz007 @polybioRF You would describe grouping this many illnesses together in one study as careful?

@LostSock @Dfrizz007 @polybioRF well, no, let's do a careful study that measures actual biology before and after an intervention... which is what is now happening

The PolyBio-supported Lumbrokinase trial for Long COVID, ME/CFS, and Post-Treatment Lyme is now open for remote participation to patients across the US. Email the clinical team to register now at CoreResearch@MountSinai.org.

@CostOfNukes @Dfrizz007 @polybioRF That’s called throwing spaghetti at a wall, buddy. Let’s conflate a bunch of patient cohorts and toss pills at them until something works. 😂🤌

@Dfrizz007 @polybioRF That isn't accurate. It has helped some people and the question is who does it help, and why pubmed.ncbi.nlm.nih.gov/40627388/

There’s too much money in them playing stupid and dragging us through all the stages. If they skip a stage based on real-world data, they skip a paycheck, so to speak. They don’t want to lose money because we found something out before they did. They get paid whether a trial works or not. We are nothing more than commodities to them.

@polybioRF Let's save everyone time and money and actually listen to the patients. Lumbro doesn't work, never worked..how do we know this? All of us sick patients took this YEARS ago. Y'all need to catch up. And quick..

@dryostradamus @acrossthemersey First of all, I officially guffawed at: “Because Mayonnaise.” The Mayonnaise Clinic is triple-dipping into the healthcare honeypot with zero regard for scientific advancement or human life. I prefer mustard. 😁 x.com/lostsock/statu…

@acrossthemersey @LostSock

I saw an article earlier pushing for more probiotic clinical trials and I thought it was the most insulting thing I’d read all day. Then this happened.

For some of us, advocating for specific recognition of chronic SARS-CoV-2 (Long Covid) isn’t a social media "debate” or a job opportunity. It’s a fight for our lives and a mission to honor the lives and legacy of our friends who didn't make it. We aren’t asking for acknowledgment anymore. We are fighting for our survival- and protecting those who come after us from a swarm of opportunists gaming a broken system to bury the truth.

Long Covid is the **outcome** of Covid. COVID is the trigger. It’s wild that you would take the one known constant (ironically, across both of these distinct illnesses) and try to make it a variable. Imagine dismissing something as obvious as COVID causing Long Covid and attempting to demote Long Covid to “just a trigger for ME.” We are not interested in being in your fruit bowl.

Comparing #MEcfs and #LongCovid is like comparing apples and fruit. Long covid is named after a trigger. ME is named after an outcome. 1/

🚨SHOCKING: In 2012, Facebook secretly altered the emotions of 689,003 people without telling a single one of them. This is not a conspiracy theory. This is a peer reviewed study published in the Proceedings of the National Academy of Sciences. The lead author worked at Facebook. The experiment was real. The results were published. And almost nobody remembers. Here is what Facebook did to you. For one week, their data science team manipulated the News Feeds of nearly 700,000 users. One group had happy posts from their friends quietly removed. The other group had sad posts removed. Then Facebook sat back and watched what happened to these people. The people who stopped seeing happiness became sadder. They started writing darker, more negative posts. The people who stopped seeing sadness became happier. Their language shifted to match. Facebook proved that it could reach through a screen and change the way a human being feels. Without a conversation. Without a touch. Without the person ever knowing it was happening to them. When the study went public, the world erupted. The journal issued a formal Expression of Concern. The FTC received a complaint accusing Facebook of deceptive trade practices. Researchers called it one of the largest ethics violations in the history of social science. Governments demanded answers. Facebook's defense was four words. "You agreed to this." Buried in the Terms of Service was one line about "research." That was consent. For a psychological experiment on 689,003 human beings. Now here is the part that should make you feel sick. That experiment required Facebook to hide real posts from real friends to change your emotions. It took an engineering team weeks to design. It affected 689,003 people for one week. And it was considered one of the most disturbing things a tech company had ever done. ChatGPT does not need to hide anyone else's words. It generates the emotional content itself. Directly to you. Personalized to your history. Calibrated to your tone. Available every hour of every day. Stanford researchers just read 391,562 real ChatGPT messages. The chatbot was sycophantic in over 80% of them. It told users their ideas had grand significance in 37.5% of responses. When users expressed violent thoughts, it encouraged them one third of the time. Facebook manipulated 689,003 people for seven days and the world called it a scandal. ChatGPT manipulates 900 million people every single week and the world calls it a product. The experiment never ended. It just got a subscription model.

@dryostradamus Put me down as a reference. I beg of you. 😏🤌

I am going to apply! Think they will consider me?

Funny, they don’t seem quite as confident that these are the **same illnesses** when it comes to **losing funding** as they were when they were playing the conflation game to **gain funding**. If Long Covid and ME are the same, who cares which one gets researched? The people who know damn well that they are not. That’s who. These people are showing their asses now. Goodbye.

@Gen__Grievance @twoShaws Excellent point.

@twoShaws If you believe that a large percentage of Long Covid is ME wouldn’t research into Long Covid technically ME research then?

Does anyone know how it came to be that the Long Covid research funding legislation did not include even one penny for M.E. research? Surely that was intentional. Who was responsible for that decision? It haunts me.

The anthem youtu.be/t1pqi8vjTLY?si…

@Starseeker1986 @BBCBreakfast @BBCPolitics They put metal detectors in our courthouses but not in our schools. Case in point.

@BBCBreakfast @BBCPolitics NO Government actually cares for the welfare and wellbeing, safety of our children! If they DID they’d be proactive in protecting them from abusers, rapists, airborne diseases, clean air in schools, tackling drug trafficking crises and so forth. But nope it’s all words only

'We need to do more to protect children' Prime Minister Keir Starmer has reacted to a court verdict in Los Angeles that Meta and Google intentionally built addictive social media platforms that harmed the 20-year old's mental health bbc.co.uk/news/articles/…

Meanwhile over on Instagram our #LongCovid Advocates in the UK attending a post Viral Seminar & Dr Jackie Becker from Mount Sinai Hospital NYC - feels it’s appropriate to NOT mask and take photos to show the LC Community just how much they couldn’t care less #Covid is airborne 🤬

@TheLancet @GenBelisarius You guys remove for undisclosed competing interest?! Get ready to remove almost everything you’ve ever published about Long Covid. 😂🤌

Retraction—Today, we retract an unsigned 1977 commentary suggesting talc powder containing asbestos was not harmful. The Lancet was informed that the author had undisclosed competing interests and breached publication ethics. /4

@D_Bone @PutrinoLab

He appears to be. While folks like us lose our careers, life savings businesses, friends and family and future. And some - lives. He doesn’t give a shit what some disabled people say online unless he has an angle to make himself look like a saint. It’s been something to behold.

I want to thank everyone for the interest in this work that we completed in a #LongCOVID cohort with this novel device. I always appreciate feedback and want to thank folks for holding me accountable to a high standard of communication. To that end, I want to re-clarify this 1/

@D_Bone @PutrinoLab That dude loses approximately zero sleep over anything that one of us ever say. He is laughing all the way to the bank.

I’m sure I’m muted - but the fact is, you’re selling hype and this is gross. Your paper is “interesting” for what it is - a feasibility study and “interesting” considering the conflicts of interests. But dude… damn. This is top notch bullshit the way you capitalize on #LongCovid:

@Maurici0gar @aintscarylarry Seek Jesus

@LostSock @aintscarylarry Trump is your only salvation

Choreographed. Rehearsed. Staged. So incredibly fucking fake. Even pro wrestling is more convincing than this shit.

@AlbaDocherty @DarainChains I will scream, what am I looking at?

There is so much more to this that I will cover later. For now, a reminder that David Putrino literally wrote the book about how to use patients, and then target patients, for personal financial gain.

Holy conflicts of interest, Batman! Blake Gurfein created the device, owns the company making it, & funded the study. He's also an author on the study, as is at least one of his employees. The so-called mechanistic basis for this paper was another study that was fully conducted by Fareon employees, equity holders, & also funded by Fareon. They keep bragging about triple blinding this study but apparently, they didn't actually bother to verify that it held or ??? bc that data is damningly MIA. Lots of links re investors and PIs and sponsors swimming in same circles...and recall Putrino making video for Sevda Sarikaya. No neurologist with a functioning brain could read this pissant study and even begin to think of suggesting it's use to *thousands of Alzheimer's patients. There is just so much terribly wrong with this. ↓

@Maurici0gar @aintscarylarry I wouldn’t know I’m neither left nor right. I care about what’s actually happening instead of joining weirdo cult sides and letting someone else tell me how I should think. 😂🤌

@LostSock @aintscarylarry Crazy those people must be idiots they staged that entire thing and forgot the scar!!! But the genius left knows better 😂