Deb K

@liamsLCjourney In all due respect, how do you think you’ll have 18-waking hours with Stage 4 ME/CFS

Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME. For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to. At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause: Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves. So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community. I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look): - Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting. - Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up - In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers. - I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community. I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced. But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned: - Guides and essays: - The Severe PEM Crash Survival Guide - What's the Deal With Brain Retraining? - So You Have Long COVID, Now What? - ...and so many more! - Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks) - The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations - Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME - Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME - Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other - Creating Long COVID and ME microgrants to fund people to work on small but impactful projects - Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!) - Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!) No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led. Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.

@nickshirleyy They’ve had 4+ months to eliminate evidence, what is the expectation at this point?

What a glorious day 🙂‍↕️ Use code: learingday for 25% off @ shop.antifraudclub.com Here’s Ilhan and here friends at the Quality Learing Center, maybe investigate her next?

Happy Learing Day 🎉 Today the Learing Center and 21 other fraudulent businesses were raided by the FBI. Here's what this means: - There was enough evidence to get search warrants - Tim Walz reversed his previous statements, confirming the fraud is real - Fraudsters across America are now on alert - Our tax dollars are being saved ARREST THEM ALL

@robertlufkinmd 100%! My son had height goals, I knew from a college nutrition class that I could best impact growth milestones by instilling excellent sleep hygiene & prioritizing real food, while avoiding environmental toxins. He’s recently passed 6’2”

Spent the weekend in Reno watching my daughter's volleyball team play match point after match point. They won. Next stop: Nationals in Indianapolis. Here's what I keep noticing on the sidelines: The kids who train hardest at 14 are the ones whose parents prioritized sleep, real food, and unstructured outdoor time when they were 6. Longevity isn't built in a clinic at 60. It's built in living rooms, kitchens, and gym bags decades earlier. Proud dad. Quiet metabolic scientist.

@CraigBrockie Yes. Certainly not what my son & I expected when the day we got a flu vaccine. Through a complicated “perfect” storm of immune dysregulation & genetic mutations making us susceptible, both now have “the gift” of instant, endless, dissatisfying sleep. Zero ⭐️ recommendation

@DebK_hEDS That’s one way to solve the problem, though I’m guessing not the one most people are aiming for

What’s your secret to falling asleep when you just can’t seem to?

@Halo_chains You did it EXACTLY right! We anticipated on the first sleepover, discussed with hosting mom, she had older kids and was a pro, told us her plan if there was a problem. Got the call, made the 30-minute drive, celebrated his success for making a good part of the night and trying.

Hosted my 8yo daughter’s birthday sleepover as a single mom. One girl (first sleepover, no heads-up) woke up at 1:30am crying, terrified, begging for her mom. I tried comforting her for a while but she was spiraling, so I called her mom to pick her up. Mom showed up annoyed and later texted that I should’ve “waited it out” till morning , now her daughter’s embarrassed and scared of future sleepovers. I wasn’t told this was her first time away from home, and I didn’t want to force a distressed kid to stay during my child’s party. Was I wrong for sending her home instead of staying up all night playing therapist? Single moms especially what would you have done?

@newstart_2024 Brain difference - NOT disorder. A brain that works differently than 90-95% of others is not wrong, it’s just different. You don’t need medication to fix it. Neuroinflammation can mimic ADHD, & US brains are at high risk because this country loves environmental toxins in its food

@newstart_2024 Grateful for all I learned over years, for doctors that fought me, & eventually saw what I saw & apologized for pushing RX, we learned together. Use low dose, short acting as needed, more so for sx of narcolepsy & neuroinflammation. Diet, mindfulness, movement help.

“No medication actually heals ADHD — they only suppress symptoms.” Gabor Maté said this on Steven Bartlett’s podcast and it really made me stop and think. He explained that the real solution isn’t pills. It’s creating a calm, accepting, low-stress home where parents work on their own stresses so they don’t unconsciously pass them on. When that happens, many kids improve dramatically without medication. Meds, at best, are a temporary stopgap — never the final answer, and no child should be forced into them. We’ve been quick to label kids with a “brain disorder” and reach for pills, but a lot of it seems to be kids reacting to the stressed environments we’ve created. Shifting focus from “fix the child” to “fix the conditions” feels like a much more honest and compassionate approach. Do you think we’re over-relying on medication for ADHD, or is environment and parenting the bigger missing piece? What’s your experience or take?

@DiaryofaSickGrl Brain eating amoeba - Necrotizing Fasciitis - is up there on scariest, plus that one seems to be increasing with warmer waters each summer

What’s the scariest disease you’ve ever heard of?

@DiaryofaSickGrl Maybe not the scariest, but I’d say PANS/PANDAS, which is really just neuroinflammation - so all the immune system inflammation driven brain and nervous systems diseases

@katydidalot @DiaryofaSickGrl Heard in-laws family story about cousin with rabies late 1800s or early 1900s, ghastly

@DiaryofaSickGrl Prion Diseases like Mad Cow or CJD. Rabies is up there, but I think prion diseases win out.

@WallStreetApes Solution: buy a fresh pineapple for $2.99 and bypass the can

Another product weight scandal at Walmart Now you need to check your canned foods too Here are 2 cans of crushed pineapple, both are marked the same weight. Both have the water drained out of them One of the cans has a significant amount less of crushed pineapple compared to the other. The one that has more is from 8 months ago This isn’t Shrinkflation, this is fraud. Product weight issues happen far too often at Walmart to be an accident When this happens, report it to Weight and Measures commission

@AutonomicBrad77 Here’s a freebie from my Covid doc: “try niacin, I hear that might help”

@HerbsandDirt They gatekeep too much

Went to pickup my NP thyroid medication like I do every 3 months for the last 10 years. New pharmacist. She acted like I was trying to refill Percocet or Oxy. “Why NP?” Me: “Versus Synthroid or Levo? Because T4 only medications are poison for many of us.” For a minute I thought she wasn’t going to fill it, and I’d be on some randos TikTok for losing my mind ON my birthday no less . She then prints this out, and asks me if I’d like immunizations, because I’m “not up-to-date.” “I’m in a huge hurry; can I get them all at once?” And this Gen Z pharmacist…without missing a beat, says “absolutely.” I just grabbed the form and walked off. @cvspharmacy , you need to train your people better. And why the high turnover rate at your pharmacies? Unbelievable.

@WallStreetApes I’ll buy my paint in DC or VA

The state of Maryland ads a new mandatory fee on every gallon of paint sold, the money will be given to a nonprofit Professional painter “I mean I was immediately sitting and doing the math and thought this can't be. I was livid” The new fee amount depends on the size; - Larger than half pint up to smaller than 1 gallon: $0.50 - 1 gallon up to 2 gallons: $1.15 •-Larger than 2 gallons up to 5 gallons: $2.25 100% of the fee revenue goes directly to a nonprofit called PaintCare

@TheGregYang Excellent!! 72-hours is when it really becomes beneficial and helps so much

just did a 48hr fast -- wow it's the most powerful intervention yet: energy is much better and brain stamina is much higher, and this is even comparing against the baseline of me doing keto and intermittent fasting last 2 months I mainly did it because I still have remaining gut sensitivities from few weeks ago so I wanted to give my stomach a break I didn't encounter any difficulties or big hunger issues (probably because I'm quite keto adapted at this point), and just slipped straight into it, but YMMV ofc I'm still continuing the fast, making sure to get enough electrolytes It'd be funny if this cures my condition once I fast for long enough

@BillAckman @X I support your approach 100%. Take it to Court. Been observing these cases for a while.

I am reaching out to the @X community for advice with the likely risk of sharing TMI. I have been sufficiently upset about the whole matter that I have lost sleep thinking about it and I am hoping that this post will enable me to get this matter off my chest. By way of background, I started a family office called TABLE about 15 years ago and hired a friend who had previously managed a family office, and years earlier, had been my personal accountant. She is someone that I trusted implicitly and consider to be a good person. The office started small, but over the last decade, the number of personnel and the cost of the office grew massively. The growth was entirely on the operational side as the investment team has remained tiny. While my investment portfolio grew substantially, the investments I had made were almost entirely passive and TABLE simply needed to account for them and meet capital calls as they came in. While TABLE purchased additional software and other systems that were supposed to improve productivity, the team kept increasing in size at a rapid rate, and the expenses continued to grow even faster. While I would periodically question the growing expenses and high staff turnover, I stayed uninvolved with the office other than a once-a-year meeting when I briefly reviewed the operations and the financials and determined bonus compensation for the President and the CFO. I spent no time with any of the other employees or the operations. The whole idea behind TABLE was that it would handle everything other than my day job so that I would have more time for my job and my family. Over the last six years, expenses ballooned even further, employee turnover accelerated, and I became concerned that all was not well at TABLE. It was time for me to take a look at what was going on. Nearly four years ago, I recruited my nephew who had recently graduated from Harvard and put him to work at Bremont, a British watchmaker, one of my only active personal investments to figure out the issues at the company and ultimately assist in executing a turnaround. He did a superb job. When he returned from the UK late last year after a few years at Bremont, I asked him to help me figure out what was going on with TABLE. When I explained to TABLE’s president what he would be doing, she became incredibly defensive, which naturally made me more concerned. My nephew went to work by first meeting with each employee to understand their roles at the company and to learn from them what ideas they had on how things could be improved. He got an earful. Our first step in helping to turn around TABLE was a reduction in force including the president and about a third of the team, retaining excellent talent that had been desperate for new leadership. Now here is where I need your advice. All but one of the employees who were terminated acted professionally and were gracious on the way out (excluding the president who had a notice period in her contract, is currently still being paid, and with whom I have not yet had a discussion). The highest compensated terminated employee other than the president, an in-house lawyer (let’s call her Ronda), told us that three months of severance was not enough and demanded two years’ severance despite having worked at the company for only two and one half years. When I learned of Ronda's request for severance, I offered to speak with her to understand what she was thinking, but she refused to do so. A few days ago, we received a threatening letter from a Silicon Valley law firm. In the letter, Ronda’s counsel suggests that her termination is part of longstanding issues of ‘harassment and gender discrimination’ – an interesting claim in light of the fact that Ronda was in charge of workplace compliance – and that her termination was due to: “unlawful, retaliatory, and harmful conduct directed towards her. Both [Ronda] and I [Ronda’s lawyer] have spoken with you about [Ronda’s] view of what a reasonable resolution would include given the circumstances. Thus far, TABLE has refused to provide any substantive response. This letter provides the last opportunity to reach a satisfactory agreement. If we cannot do so, [Ronda] will seek all appropriate relief in a court of competent jurisdiction.” The letter goes on to explain the basis for the “unsafe work environment” claim at TABLE: “In early 2026, Pershing Square’s founder Bill Ackman installed his nephew in an unidentified role at TABLE, Ackman’s family office. [His nephew]—whose only work experience had been for TABLE where he was seconded abroad for the last four years to a UK watch company held by Ackman—began appearing at TABLE’s offices and conducting interviews of employees without a clear explanation of his role or the purposes of these interviews. During this period, he made a series of inappropriate and genderbased [sic] comments to multiple employees that created an unsafe work environment. Among other things, [his nephew] made remarks about female employees’ ages (“Tell me you are nowhere near 40”), physical appearance (“Your body does not look like you have kids”), as well as intrusive questions about family planning and sexual orientation (“Who carried your son? Who will carry your next child?”). These incidents were reported to senior leadership at TABLE and Pershing Square. Rather than being addressed appropriately, the response from senior management reflected, at best, willful blindness to the inappropriateness of [his nephew]’s remarks and, at worst, tacit endorsement.” The above allegations about my nephew had previously been brought to my attention by TABLE’s president when they occurred. When I learned of them, I told the president that I would speak to him directly and encouraged her to arrange for him to get workplace sensitivity training. The president assured me that she would do so. When I spoke to my nephew, he explained what he actually had said and how his actual remarks had been received, not at all as alleged in the legal letter from Ronda’s counsel. I have also spoken to others at the lunch table who confirmed his description of the facts. In any case, he meant no harm, was simply trying to build rapport with other employees, and no one, as far as I understand, was offended. Ironically, Ronda claims in her legal letter that TABLE didn’t take HR compliance seriously, yet Ronda was in charge of HR compliance at TABLE and the person who gave my nephew his workplace sensitivity training after the alleged incidents. In any case, Ronda, as head of compliance, should have kept a record or raised an alarm if indeed there was pervasive harassment or other such problems at the company, and there is no evidence whatsoever that this is true. So why does Ronda believe she can get me to pay her nearly $2 million, i.e., two years of severance, nearly one year of severance for each of her years at the company? Well, here is where some more background would be helpful. Over the last two months, I have been consumed with a major family medical issue – one of my older daughters had a massive brain hemorrhage on February 5th and has since been making progress on her recovery – and I am in the midst of a major transaction for my company which I am executing from a hospital room office next to her . While the latter business matter is publicly known, the details of my daughter’s situation are only known to Ronda because of her role at our family office. Now, let’s get back to the subject at hand. Unfortunately, while New York and many other states have employment-at-will, there has emerged an industry of lawyers who make a living from bringing fake gender, race, LGBTQ and other discrimination employment claims in order to extract larger severance payments for terminated employees, and it needs to stop. The fake claim system succeeds because it costs little to have a lawyer send a threatening letter and nearly all of the lawyers in this field work on contingency so there is no or minimal cash cost to bring a claim. And inevitably, nearly 100% of these claims are settled because the public relations and legal costs of defending them exceed the dollar cost of the settlement. The claims are nearly always settled with a confidentiality agreement where the employee who asserts the fake claims remains anonymous and as a result, there is no reputational cost to bringing false claims. The consequences of this sleazy system (let’s call it ‘the System’) are the increased costs of doing business which is a tax on the economy and society. There are other more serious problems due to the System. Unfortunately, the existence of an industry of plaintiff firms and terminated employees willing to make these claims makes it riskier for companies to hire employees from a protected class, i.e., LGBTQ, seniors, women, people of color etc. because it is that much more reputationally damaging and expensive to be accused of racism, sexism, and/or intolerance for sexual diversity than for firing a white male as juries generally have less sympathy for white males. The System therefore increases the risk of discrimination rather than reducing it, and the people bringing these fake claims are thereby causing enormous harm to the other members of these protected classes. So what happened here? Ronda was vastly overpaid and overqualified for the job that she did at TABLE. She was paid $1.05 million plus benefits last year for her work which was largely comprised of filling out subscription agreements and overseeing an outside law firm on closing passive investments in funds and in private and venture stage companies, some compliance work, and managing the office move from one office to another. She had a very good gig as she was highly paid, only had to go into the office three days a week, and could work from anywhere during the summer. Once my nephew showed up and started to investigate what was going on, she likely concluded that there was a reasonable possibility she would be terminated, as her job was in the too-easy-and-to-good-to-be-true category. The problem was that she was not in a protected class due to her race, age or sexual identity so she had to construct the basis for a claim. While she is female and could in theory bring a gender-based discrimination claim, she reported to the president who is female and to whom she is very close, which makes it difficult for her to bring a harassment claim against her former boss. When my nephew complimented a TABLE employee at lunch about how young she looked – in response to saying she was going to her 40-year-old sister’s birthday party, he said ‘she must be your older sister’ – Ronda immediately reported it to our external HR lawyer. She thereby began building her case. The other problem for Ronda bringing a claim is that she was terminated alongside 30% of other TABLE employees as part of a restructuring so it is very difficult for her to say that she was targeted in her termination or was retaliated against. TABLE is now hiring an external fractional general counsel as that is all the company needs to process the relatively limited amount of legal work we do internally. In short, Ronda was eminently qualified and capable and did her job. She was just too much horsepower for what is largely an administrative legal role so she had to come up with something else to bring a claim. Now Ronda knew I was a good target and it was a good time to bring a claim against me. She also knew that I was under a lot of pressure because on March 4th when Ronda was terminated, my daughter had not yet emerged from consciousness, she was not yet breathing on her own, and my daughter and we were fighting for her life. I was and remain deeply engaged in her recovery while at the same time I was working on finishing the closing for the private placement round for my upcoming IPO. Ronda also knew that publicity about supposed gender discrimination and a “hostile and unsafe work environment” are not things that a CEO of a company about to go public wants to have released into the media. And she may have thought that the nearly $2 million she was asking for would be considered small in the context of the reputational damage a lawsuit could cause, regardless of the fact that two years of severance was an absurd amount for an employee who had only worked at TABLE for 30 months. She also likely considered that I wouldn’t want to embarrass my nephew by dragging him into the klieg lights when her claims emerged publicly. So, in summary, game theory would say that I would certainly settle this case, for why would I risk negative publicity at a time when I was preparing our company to go public and also risk embarrassing my nephew. Notably, she hired a Silicon Valley law firm, rather than a typical NY employment firm. This struck me as interesting as her husband works for one of the most prominent Silicon Valley venture firms whose CEO, I am sure, has no tolerance for these kinds of fake claims that sadly many venture-backed companies also have to deal with. I mention this as I suspect her husband likely has been working with her on the strategy for squeezing me as, in addition to being a computer scientist, he is a game theorist. My only advice for him is to understand more about your opponent before you launch your first move. All of the above said, gender, race, LGBTQ and other such discrimination is a real thing. Many people have been harmed and deserve compensation for this discrimination, and these companies and individuals should be punished for engaging in such behavior. Which brings me to the advice I am seeking from the X community. I am not planning to follow the typical path and settle this ‘claim.’ Rather, I am going to fight this nonsense to the end of the earth in the hope that it inspires other CEOs to do the same so we shut down this despicable behavior that is a large tax on society, employment, and the economy and contributes to workplace discrimination rather than reducing it. Do you agree or disagree that this is the right approach?

@WallStreetApes Had a doctor do that, tried to charge $3000 x2 for tests previously covered at 100%, I said no, they said how about $300. I said no, you didn’t advise me in advance it would no longer be covered. They wrote it all off.

American has insurance and needed to go to the doctor for an annual visit She called the office to make extra sure both the office and the doctor were “in-network” She just received the bill. The doctor office and doctor were in network, but not the lab test her doctor ordered “This is why people in America are fed up with our healthcare system and I have good insurance. And I'm like, this is crazy. I have gone out of my way to go to doctors that are out of network because I actually get good care and it's worth my money. So when I go to a doctor in network and thinking, oh, thank God I'm not gonna have a bill, and I have a bill. Unacceptable. Unacceptable.”

@FOXBaltimore @RebeccaPryorTV I was so sad when the several week long light festival disappeared from the Inner Harbor, that seemed to coincide with the end

What has happened to Baltimore's Inner Harbor? @RebeccaPryorTV took a trip down memory lane to look at the changes to the once popular attraction in Charm City. FOXBaltimore.com

@ClownWorld Who’s gonna tell her that her pretty privilege fears are unfounded