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**.

You don’t schedule a protest. You show up and don’t leave, or you show up every single day. This is why this goof is still in office.

@_VFK_DAA @dryostradamus @Rob_DeRosa Good. Anyone with MECFS or advocating for that illness should begin immediately.

@dryostradamus @Rob_DeRosa But the community doesn’t even allow subgroups. Long COVID? All the same. ME/CFS? All the same. Long COVID = ME/CFS. Imagine how many worldviews would collapse if ME/CFS were split into five distinct conditions.

Another Long COVID clinical trial bites the dust. I know from clinical experience that Ivabradine does have benefit in a certain group of patients. But typical for most of these trials. They enrolled the wrong cohort of patients. Rinse and repeat until all the funding is gone? recovercovid.org/news/recover-a…

I’m not really into conspiracy theories, but if you download the White House app, you’re an idiot. Thank you, that will be all.

@solodoc It’s only on comments, not posts.

There is a dislike button on X now. What a time to be alive.

@DebHolloway @dryostradamus @_VFK_DAA Damn it. 😂😂😂

@LostSock @dryostradamus @_VFK_DAA I didn’t think about looking in the cereal box for my degree, Winter! Stay tuned.

That’s because no one gives a shit about either population, but one group of people is virtue signaling. It’s easy for them because if they are not the one bringing aid, their own “outrage” never calls on them to be a better person. Their sanctimony ends where their responsibility begins.

I stayed out of the recent masking discourse, but I noticed something pretty ironic about it. - Activists bringing aid to vulnerable people in need, but not wearing masks, very bad. - Researchers not wearing masks when presenting or treating vulnerable patients, no problem.

@dryostradamus @_VFK_DAA I still look inside every cereal box for my medical degree. Still no luck but I’m staying optimistic. 😁

@LostSock @_VFK_DAA

@CostOfNukes @Dfrizz007 @polybioRF Me too.

@LostSock @Dfrizz007 @polybioRF Talking about the trial above

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.

@uht_fresh 😂😂😂😂🤌

@LostSock 👇😂😉💙#Moo🐮

@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

@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?