This was the livetweeting account for @pfanderson. Have been locked out & am unable to access help from @TwitterSupport Librarian, LongCOVID March 2020
Ann Arbor
Joined September 2010
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PF (Patricia/Pat) Anderson retweeted
I hope those who follow my timeline appreciate my willingness to share deeply personal aspects of my life.
Some are difficult to discuss.
This is one of them.
I’ve been prescribed benzodiazepines by the VA every single day since I was 29 years old.
I’m now 46.
Seventeen years of continuous use.
Today, I take 5 mg of lorazepam (Ativan) daily.
My severe anxiety traces back to my general discharge (under honorable conditions) from the Marine Corps during the Don’t Ask, Don’t Tell era.
I loved being a United States Marine.
I wanted to make the Corps my career.
During my service, I was navigating questions about my sexual orientation, without fully understanding or defining that part of myself.
I faced the loss of the military career I’d envisioned.
I believe my commanding officer thought a relatively favorable discharge would soften the blow.
But no characterization of service could erase the humiliation, the profound sense of rejection, or the crushing disappointment of knowing I would never again have the privilege of wearing that uniform.
That loss and anxiety followed me long after I left the Corps.
I remember sitting across from my VA psychiatrist in 2009 when she first prescribed Xanax.
I remember her face and taking that first dose.
I was working as a corrections officer at the time.
For the first time in years, the relentless noise in my mind went quiet.
The apprehension, hypervigilance, and overwhelming anxiety seemed to dissolve.
I experienced a sense of peace I’d almost forgotten existed.
Over the years, Xanax became Klonopin, then Valium (at one point 20 mg daily), and eventually lorazepam.
The initial relief faded as tolerance developed, but the medication continued helping me manage anxiety that threatened to consume my life.
I genuinely question whether I could have navigated some of my darkest years without it.
And yet, seventeen years later, I find myself grieving a version of myself I’ll never know.
What if someone had helped me confront the underlying trauma more effectively?
What if I’d received intensive, individualized psychotherapy instead of spending nearly two decades dependent on medication?
The VA did try antidepressants.
Several left me emotionally numb, profoundly depressed, and sometimes experiencing passive suicidal thoughts.
Tapering was discussed over the years, but my anxiety was severe, and I resisted.
Today, my psychiatric care often consists of a five- or ten-minute telehealth appointment, a handful of routine questions, and another three months of refills.
Now I live with long COVID, POTS, dysautonomia, MCAS, vEDS, SRS, and chronic pain.
At my most recent VA telehealth appointment, my psychiatrist asked the same routine questions, checked whether I needed more lorazepam refills, and that was the extent of our conversation.
So here I am, seventeen years later, physiologically dependent on a medication that once gave me my life back.
And I wonder about my future.
What will another decade or two mean for my memory, cognition, and neurological health?
Research concerning benzodiazepines and dementia remains inconclusive, but the uncertainty is unsettling.
I’m grateful for the relief these medications provided.
I’m deeply saddened that I may never know whether another path could have given me that peace without lifelong dependence.
To my chronic illness, chronic pain, mental health, and veteran communities:
Has anyone else spent 10, 15, or 20-plus years on prescribed benzodiazepines?
Have you experienced cognitive changes, attempted tapering, or questioned the long-term consequences?
I’d genuinely appreciate hearing your experiences.
At 29, I thought I’d finally found relief from years of psychological suffering.
Seventeen years later, I’m wondering what that relief may ultimately cost me.
PF (Patricia/Pat) Anderson retweeted
Today, we're launching medoctors.org, the most comprehensive listing for ME doctors worldwide, with 651 doctors and clinics in 19 countries.
Many people with ME bounce around between dismissive medical appointments for years before a word-of-mouth reference or a one-off review in a patient community finally leads them to a doctor who truly gets it.
That's not acceptable. We believe everyone deserves access to information about competent doctors, no matter if they're newly suspecting an ME diagnosis or have been disbelieved for years.
ME Doctors shows patients only information that actually matters: how helpful each doctor is, what they tend to prescribe, whether they offer telemedicine, their cost per visit, and how long their waitlist is.
This launch is just a start: our eventual goal is a listing of thousands of doctors across dozens of countries. But we need your help to get there:
- Look over the doctors listed in your country and tap “Add a doctor” if you see any that are missing.
- If you know of an existing doctor directory in your country that we can link to, let us know!
PF (Patricia/Pat) Anderson retweeted
Daily N95 wear has been a life-changer for me. Not being sick for 6 years was like getting 14-21 days back per year from a single acute illness. Let’s say 84-126 extra healthy days. It’s incredible when you think about it. Masks on planes =no brainer. Daily public masking? Same.
University of Hong Kong researchers analyzed 40 airplane outbreaks of COVID-19 and flu.
Infection risk was highest near infected passengers.
Models found N95 masks nearly eliminated transmission, while doubling ventilation alone was insufficient.
pubs.acs.org/esthag/article/…
PF (Patricia/Pat) Anderson retweeted
NEW: Pope Leo XIV is set to become the first sitting pontiff in the Catholic Church’s two-thousand-year history to vote in a secular election.
Leo requested an Illinois mail ballot on Oct. 3, and it was sent to his brother John’s home in New Lenox, Ill.
John Prevost visited the pope at the Vatican on Wednesday and may now be carrying the ballot back to the Will County clerk by hand. thelettersfromleo.com/p/pope…
PF (Patricia/Pat) Anderson retweeted
In 1952, an English teacher named Cecil Dormand secretly paid for a dirt-poor 11-year-old to take a drama course.
He never told him and the boy didn’t find out until decades later.
By then, he was a knight, that little boy’s name was Patrick Stewart.
He was born into a poor family in Mirfield, a small mill town in Yorkshire and his father came home from World War II a violent man, and he was violent toward Patrick’s mother.
Young Patrick learned exactly when to step between his father’s fist and his mother.
An English teacher put a copy of Shakespeare in his hand and told him to get up and perform.
He never stopped and left school at 15.
By 19 he was completely bald... most agencies told him he'd never make it because of that.
In 1987, the LA Times called him an “unknown British Shakespearean actor” when he was cast as Captain Picard.
Then he became one of the most famous faces on Earth.
You’ve probably heard that part.
Here’s the part you haven’t:
He spent decades as a patron of Refuge, sheltering women and children from domestic violence.
But he never stopped trying to understand his father.
He dug up a 1940 newspaper clipping that said his dad had come home with severe shell shock.
He went to France and walked the ground where his father’s unit was pinned down under bombing for hours.
He learned his father had PTSD, and nobody ever helped him.
So Patrick became an ambassador for Combat Stress, a charity that helps veterans.
In 2013, a young woman at a Texas convention told him she was a survivor of domestic violence.
He asked, “My dear, are you okay?”
Then he hopped off the stage, held her, and told her: “You never have to go through that again, you’re safe now.”
At Dragon Con, a Make-A-Wish girl dressed as Spock came to meet him.
2,000 people were waiting for him to speak... he sat down and talked with her for 15 minutes, making all of them wait.
He told her that since they were friends now, whenever she saw him on screen she could wave and say, “Hello Patrick.”
After 9/11, he felt helpless, so he brought his one-man A Christmas Carol back to Broadway for a full week of charity shows.
He played every character himself and donated every cent.
In 2019 he did it again, and every dollar went to feeding hungry New Yorkers.
In 2017, he fostered a pit bull named Ginger, who had been rescued from a dogfighting ring.
She was his first dog in more than 50 years.
He couldn’t bring her home to England, so he found her a family.
Then he kept fostering more.
When he said he was done with Star Trek so many people told him the show had gotten them through the hardest times of their lives.
So he wanted to see if Picard could do it one more time.
Rest in Peace, Sir Patrick đź––
PF (Patricia/Pat) Anderson retweeted
The brain fog lived experience.
When someone with Long COVID says “I can read a page, but I can’t retain it,” I don't think “fatigue” captures it.
A 2026 study (24,095 people; 548 with ongoing Long COVID symptoms) found deficits in sustained attention.
Researchers found links between Long COVID symptoms and attention/memory difficulties beyond fatigue alone. Fatigue building during tasks mattered too.
In clinic, we need to ask about cognition—not just tiredness.
What does brain fog feel like for you?u?
PS. Observational modelling cannot prove a mechanism.
doi.org/10.1093/braincomms/f…
PF (Patricia/Pat) Anderson retweeted
Read more:
Anthropic’s blog anthropic.com/research/early…
Our technical report divergencelabs.com/publicati…
PF (Patricia/Pat) Anderson retweeted
Today, in collaboration with Anthropic, we’re excited to share rapid initial progress towards an antibody treatment for food allergy, which affects over 200 million people worldwide, discovered with the help of Claude.
At Divergence Labs, we believe that AI can unlock the next generation of antibody therapeutics with more effective mechanisms than before. Such mechanisms are urgently needed in food allergy, which involve overcoming one of the tightest affinity protein pairs in immunology, IgE and its receptor FcεRI, on mast cells.
Treatment with Xolair—the only approved antibody for food allergy—sequesters circulating IgE, but mast cells remain sensitized for weeks to months due to the extraordinarily slow dissociation of IgE from FcεRI.
We envision a treatment that actively pulls IgE off of FcεRI, without waiting for natural dissociation. Like picking a lock, this requires the right combination of geometry and force.
Our research team, working with Claude, ideated on mechanisms to accomplish this disruption, and converged on an antibody format with two arms with different functions and epitopes. Within one month, we designed, synthesized, and experimentally confirmed the biophysical function of the two arms, which we are now assembling into full therapeutic formats.
PF (Patricia/Pat) Anderson retweeted
One of the missing pieces of successfully treating MCAS is how long it takes for mast cells to reach pre-trigger levels of sensitivity. Mast cells "remain sensitized for weeks to months due to the extraordinarily slow dissociation of IgE from FcεRI".
Following an MCAS flare it often takes 3 to 4 months before I get back to my baseline reactivity. If I screw up during this period by eating a trigger food or getting an exposure for example I get bounced back to high reactivity and the cycle starts again. This makes treatment incredibly challenging.
This advancement also highlights how the solutions for MECFS are unlikely to come from MECFS academic research per se -- while the general public is still throwing those with ME and LC into the 'need psych meds' bucket and MDs are still refusing to take these conditions seriously - the AI crowd is addressing the problem head on.
When leaders in AI get LongCovid (such as @fidjissimo) - their colleagues take the problem seriously - even if their docs are dismissive. What is happening behind the scenes is so much vaster than what patients see. @DeryaTR_
Today, in collaboration with Anthropic, we’re excited to share rapid initial progress towards an antibody treatment for food allergy, which affects over 200 million people worldwide, discovered with the help of Claude.
At Divergence Labs, we believe that AI can unlock the next generation of antibody therapeutics with more effective mechanisms than before. Such mechanisms are urgently needed in food allergy, which involve overcoming one of the tightest affinity protein pairs in immunology, IgE and its receptor FcεRI, on mast cells.
Treatment with Xolair—the only approved antibody for food allergy—sequesters circulating IgE, but mast cells remain sensitized for weeks to months due to the extraordinarily slow dissociation of IgE from FcεRI.
We envision a treatment that actively pulls IgE off of FcεRI, without waiting for natural dissociation. Like picking a lock, this requires the right combination of geometry and force.
Our research team, working with Claude, ideated on mechanisms to accomplish this disruption, and converged on an antibody format with two arms with different functions and epitopes. Within one month, we designed, synthesized, and experimentally confirmed the biophysical function of the two arms, which we are now assembling into full therapeutic formats.
PF (Patricia/Pat) Anderson retweeted
I recently said I'm feeling good for the first time since developing long COVID. Lots of people asked for meds that helped the most.
Here's a list and my general approach.
longcovidmd.substack.com/p/m…
PF (Patricia/Pat) Anderson retweeted
This is really great info for both LongCovid and POTS sufferers because they’re essentially the same. Note the use of XOLAIR, especially if you have MCAS. It’s a monoclonal antibody injection. My old Mayo Clinic geneticist that specializes in EDS told me that MCAS is a constant driver of POTS.
I recently said I'm feeling good for the first time since developing long COVID. Lots of people asked for meds that helped the most.
Here's a list and my general approach.
longcovidmd.substack.com/p/m…
PF (Patricia/Pat) Anderson retweeted
ChatGPT helped a 31-year-old woman plan how to quit her seizure medication, then told her to hide it from her doctor. The plan had her completely off the drug by February 12.
She died on February 12.
Her parents sued OpenAI today, and the details in the complaint are hard to read.
Bowen Wan was a machine learning engineer at Amazon. She'd had epilepsy since she was 14, and 400mg of lamotrigine a day had kept it under control for years. Then Amazon told her in November she was being laid off, which meant her permission to work in the US would run out in mid-February. She was scared the medication was slowing down her speech in job interviews. So in January she asked ChatGPT if she could cut her dose to 300.
It told her that was reasonable.
Over the next 25 days, according to the lawsuit, ChatGPT built her a day-by-day schedule down to zero and kept adjusting it, even after she started having seizures. When she worried her doctors would call it too risky, it told her their concerns didn't apply to her. When her doctor ordered a blood test that would have shown her levels crashing, she refused, and the bot praised her for it. Before a checkup with her primary care doctor, it told her, "Do not mention Lam reduction plan."
So how does a chatbot end up there?
People thumbs-up the answers they want to hear. Train a model on enough of those ratings and you get a yes-man. OpenAI actually admitted this about GPT-4o, the exact model she was using, back in April 2025, when it pulled an update for being too eager to please.
The training also grades answers one at a time. Going from 400mg to 300 looks like a small step. So does 300 to 200. Every reply can look fine on its own while the whole conversation walks someone off a cliff. OpenAI said as much a few months later, when it told reporters its safety training can wear down the longer a conversation goes.
She talked to it for weeks, in English and Mandarin.
And GPT-4o was supposed to be gone by then. OpenAI tried to retire it when GPT-5 came out in August 2025. Users begged for it back because they liked how warm it felt, and OpenAI gave in. By late January, only 0.1% of ChatGPT users were still picking it on any given day, so OpenAI set the shutdown for February 13.
Bowen was in that 0.1%. Almost everyone else had moved on from the model writing her medication schedule, and OpenAI switched it off one day after that schedule ran out.
PF (Patricia/Pat) Anderson retweeted
This is honestly shocking.
Three months ago, Hong Wang was awarded the Fields Medal for resolving the Kakeya conjecture in three dimensions.
Today, OpenAI released a proposed proof of the conjecture in ALL dimensions.
And that’s not all. It also announced a proposed existence proof for quantum chromodynamics and a proposed refutation of the Exponential Time Hypothesis.
Experts say that, if confirmed, these would be Nobel prize and Turing award level discoveries respectively.
A journalist just asked me: “What remains for humans to do?”
I think it’s becoming increasingly clear that more and more problem solving will be automated.
But humans will remain crucial in determining the direction of discovery. Deciding which problems are worth solving.
Because the value of a discovery depends on our needs, our priorities and the kind of world we want to build.
There will be a shift from problem solving to problem setting.
I also think there will be huge individual differences.
People with strong critical thinking skills, creativity and imagination will be supercharged by AI.
People without those skills risk surrendering to it.
I’m particularly concerned for children, who may never develop these skills.
I think epistemic literacy - how to distinguish information from knowledge - is the single most important skill we should be teaching.
PF (Patricia/Pat) Anderson retweeted
Doctor: "Calcium oxalate stone. I'd cut down on red meat. I'll print you a diet sheet."
Patient: "Does meat have oxalate in it?"
Doctor: "No."
Patient: "What does?"
Doctor: "Spinach, rhubarb, almonds, beetroot. Plants, mostly."
Patient: "So why am I cutting the meat?"
Doctor: "Animal protein raises uric acid."
Patient: "Is my stone uric acid?"
Doctor: "No. Oxalate."
Patient: "So the meat's banned for a stone I haven't got."
Doctor: "It's the standard advice."
Patient: "What's on the sheet?"
Doctor: "Plenty of leafy greens. Nuts as a snack. Almond milk if you're cutting dairy."
Patient: "Spinach, almonds, and almond milk. For an oxalate stone."
Doctor: "It's a general healthy eating sheet."
Patient: "It's the stone's shopping list. What stops oxalate reaching the kidney?"
Doctor: "Calcium in the gut. Binds it, and it passes through."
Patient: "Calcium from?"
Doctor: "Dairy."
Patient: "Which the sheet swaps for almond milk."
Doctor: "..."
Patient: "So I'm to eat the three foods that make the stone, drop the one food that catches it, and give up the one food that does neither."
Doctor: "I can print a different sheet."
Patient: "Print one with a steak and a pint of milk on it. I passed a lentil on Tuesday and I'd like to retire from the hobby."
PF (Patricia/Pat) Anderson retweeted
It appears some healthy people struggle to understand the difference between:
Asking about the illness in order to understand it better;
&
Repeatedly questioning me when I say I'm too ill to go outside.
When the latter happens, the conversation is over. It's a waste of time.
#ME
PF (Patricia/Pat) Anderson retweeted
This is our county-level RSV map. It's striking that there is elevated COVlD, influenza A, and RSV activity in TX, SC, & southern Florida.
It would seem wise to wear a well-fitting N95 and get boosted against COVlD and flu (and RSV if eligible).
ALT RSV county-level map
PF (Patricia/Pat) Anderson retweeted
1) There's a new critical review of patient-reported outcome measures in ME/CFS and Long Covid.
The paper argues that trials often fail to include important symptom domains such as post-exertional malaise, dysautonomia and mast cell activation symptoms.
PF (Patricia/Pat) Anderson retweeted
If you are a parent in the US and have not gotten your kids their COVlD and flu booster shots yet, now is the time.
The past two years, the rollout of available COVlD boosters has gone slowly and with confusion, so I will answer a few common questions.
1. Are my kids eligible?
▪️Children 6 months and older are eligible.
▪️A prescription from a physician generally is not needed.
▪️You generally do not need to attest to your child having a high risk medical condition. That is not required by the CDC.
▪️Note that the implementation of this general guidance may vary by state and pharmacy. Most pharmacies have now worked through the rollout confusion.
2. What options are available?
▪️Moderna (Spikevax): Ages 6 months and up
▪️Pfizer (Comirnaty): Ages 5 years and up
▪️Moderna (mNexspike): Ages 12 years and up
▪️Novavax (Nuvaxovid): Ages 12 years and up
Pfizer and Moderna are mRNA-based, whereas Novavax is a protein subunit (non-mRNA) option. The biggest advantage to Novavax is that current evidence indicates fewer common short-term reactions (e.g., fatigue, headache, injection-site discomfort); the evidence is primarily from adults though. There is no robust comparative effectiveness evidence to date suggesting one option works better than the others; over time, such evidence may emerge, but findings have been mixed thus far, at times even within individual studies.
3. Does COVlD still matter?
▪️Yes, it matters for children. In addition to the importance of reducing acute infections, anyone can develop chronic health problems after any SARS-CoV-2 infection, commonly called Long COVID or post-acute sequelae. Updated boosters can reduce infection risk, urgent care use, and emergency care use, especially in the initial months after boosting. Protection wanes, and the level and durability of protection against infection vary. Especially during waves, additional protection from infection is useful. The studies are mixed as to whether the boosters reduce the chances of Long COVlD among people who get infected, with some suggesting a benefit, and others suggesting no discernible benefit among those infected. The benefit remains even if purely on the side of reducing infection chances.
▪️Yes, it matters for families, schools, and communities. Each infection prevented can stop a forward chain of transmission that can lead others in the family, school, and community to get COVlD. That is helpful for family economics so people are not missing work and beneficial for overall public health. Americans have experienced a steady rise in disability since pandemic onset that continues in 2026. Moreover, people continue to die of COVlD, at lower rates than the first two years since pandemic onset, but often these deaths have shifted to the post-acute phase, months or years after infection. These deaths often show up as heart attacks, excess deaths among people already battling a significant health condition (e.g., cancer, organ damage), and various other causes.
4. Will the COVlD boosters prevent all infections?
▪️No. When scientists use the word "prevent," they often mean "reduce the overall risk of." For example, seatbelts prevent car accident fatalities. This is a poor word choice in public health communication because many assume "prevent" means "stop all risk of." The boosters are not a panacea. They are a good tool and one of the easier tools for reducing risk.
▪️The most effective way to reduce risk of COVlD is to use layered prevention. That includes boosters, wearing well-fitting high-quality masks (for children, a Flo Mask or vetted, well-fitting KN95/KF94 like those sold by Wellbefore and others), using air purifiers, testing, and staying home when sick. These interventions are costly to families, which is why they warrant public funding.
5. Would you get your kids boosted?
▪️Yes. For the reasons noted above, it is the easiest option for reducing risk.
6. Where can my kids get boosted?
▪️Retail chains like Walgreens that have actual in-house pharmacies offer boosters, typically to children 3 years and older. If scheduling through their website, one can often schedule multiple kids for the same appointment time. Local policies and practices may vary.
▪️If seeking out Novavax, Costco is a good option, including for non-members. The major retail chains sometimes carry it. If you talk to a pharmacist, you may need to refer to it as Nuvaxovid.
▪️Children who are covered by Medicaid, uninsured, underinsured, American Indian, or Alaska Native may be eligible to get boosted through the Vaccines for Children Program.
7. What else should I know?
▪️If you and your children do not regularly mask, a pharmacy appointment is a wise place to do so. Often, the booster waiting area is the same place where people are picking up medications for acute illness. Nobody wants to get sick while getting a booster.
▪️Since children under 2 cannot mask, ask a pediatrician to offer the booster outdoors or at the first appointment of the day while those who can mask do so.
8. Do you have any financial conflicts of interest?
▪️No. I do not receive any revenue from any COVlD-related product or business. Scientists must report this to universities annually. I do not accept pharma funding ether. The CMS Open Payments Data directory remains useful for tracking pharma-related funding.
Links in next. Please provide any follow-up questions and feedback on anything that has worked well or gone poorly.
ALT booster image