
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
- Tweets40.1K
- Following2.3K
- Followers560
- Likes26.8K
PF (Patricia/Pat) Anderson retweeted
Bevor ich Dr. Stingl getroffen habe, war ich bei Dutzenden (!) Medizinern in Österreich, die kein Interesse an ME/CFS gezeigt und sich dem Thema nicht angenommen haben.
Er war für mich der Erste, der die Datenlage unvoreingenommen im Gesamtbild betrachtet, eigene Vorannahmen hinterfragt, sich international vernetzt und sehr schnell verstanden hat, was hier eigentlich passiert. Damit und mit seiner unermüdlichen Aufklärungsarbeit hat er m.E. den Grundstein für viele Verbesserungen in Österreich gelegt.
Zugleich gehört er zu den ganz wenigen, die offen darüber sprechen, früher vermutlich selbst falsche Ratschläge gegeben zu haben.
Ich kann kaum ausdrücken, wie sehr ich ihn dafür schätze. Als Menschen und als Mediziner!
Absolut korrekt.
Ich hatte keine Ahnung von ME/CFS, bevor @cstroeckw mir das erklärt hat und habe insofern sicher einigen Betroffenen davor falsche Ratschläge gegeben.
PF (Patricia/Pat) Anderson retweeted
Replying to @pfatech @SamaHoole
The berries are optional, and actually decrease the shelf life.
youtu.be/AYDuOKI8maQ?is=dRP5…
youtu.be/HQZj1-lSilw?is=yu8M…
youtu.be/JHMAoIJuiVU?is=Zfod…
PF (Patricia/Pat) Anderson retweeted
A nation’s progress is also measured by how it welcomes all people with disabilities and particular needs. Their lives are not a burden on society. They are a blessing, because they can help us to remember the foundation of the dignity of every human being and what is truly important in life. #ApostolicJourney #Argentina
PF (Patricia/Pat) Anderson retweeted
A lamb with a gut full of worms will walk past the good grass to eat a bitter plant that kills them, and the only place it ever learned which plant was at its mother's side.
Researchers at Utah State University spent years watching this, because nobody believed it. They took lambs carrying a heavy load of stomach worms and offered them two feeds. Plain alfalfa, which a lamb loves. And alfalfa laced with tannins, the bitter, mouth-drying compound that makes stewed tea undrinkable and that happens to be hard on gut parasites. Healthy lambs barely touched the bitter one. Why would they.
The wormy lambs started eating it. Then preferring it. They ate more of the medicine the sicker they were, and their worm counts fell. Then the researchers dosed them with a proper wormer, the parasites went, and the lambs went straight back to the plain feed. They took the medicine while they were ill and stopped when they were cured, which is more than can be said for most of the people in a pharmacy queue.
The second part is the one that should keep a dietitian up at night. They put lambs on a heavy, bitter diet and offered them a compound that neutralises the bitterness. Lambs that fed alongside their mothers learned to take it. Lambs taken away from their mothers never touched it. Not once. The knowledge of what to eat when something is wrong was being handed down at the trough, ewe to lamb, by example, and a lamb without its mother simply never got the lesson.
Shepherds have known a version of this for as long as there have been shepherds. The sick ewe that goes off on her own to the hedge bottom and eats something she ignores the rest of the year. The flock that heads for the rough corner of the field in a wet spring. Nobody wrote it down because it was obvious.
In 1928 a doctor in Chicago let babies choose their own food from a tray, and the one with rickets drank cod liver oil until his bones healed and then stopped. It is the same experiment, with wool on.
Meanwhile the human version of the lamb is handed a plate diagram, a list of recommended portions and a leaflet on overriding cravings, and told the instinct is the thing that needs managing.
The lamb was never given a diagram.
It had its mother, a hedge, and enough sense to stop taking the tablets when it was better.
PF (Patricia/Pat) Anderson retweeted
A wild donkey in the Arizona desert will dig a well six feet deep with its front hooves, and for half a century the United States government has been shooting it as a threat to the desert.
August on a dry wash in the Sonoran. The creek has been gone since May. The sand is hot enough to cook on and every animal for miles is standing in what shade it can find, waiting for a rain that is not coming. A burro walks down the wash, stops at a bend for no reason anyone else can see, puts its head down and smells. Then it starts digging. Front feet, one after the other, like a dog after a bone, until it is in up to its shoulders and the bottom of the hole goes dark and wet.
It drinks and walks off.
Within the hour there is a queue. Mule deer. Javelina. A bobcat. A scrub jay standing on the rim. In 2021 a biologist called Erick Lundgren published the count in Science: 59 species of vertebrate drinking at donkey wells, 64% more species than at the dry stretches of the same streams, and in the driest months the donkeys were raising the amount of open water in the desert by 300% on average and by up to 1,450%. When the wells were abandoned, cottonwood and willow seedlings came up in them. The donkey had been planting the riverbank.
Asked about his methodology, the donkey had another drink and left.
When a beaver builds a pond, a film crew is sent. When a donkey digs a well, the Park Service sends a marksman. The burros came up from Mexico with the Spanish and the prospectors, carried the ore out of every mine in the West, and were turned loose when the mines closed. Then they were reclassified. In 1979 the National Park Service planned to shoot all 577 in the Grand Canyon. A writer called Cleveland Amory raised more than $500,000 and lifted 582 of them out by helicopter, slung underneath, the most expensive taxi ride a donkey has ever taken. Death Valley shot 400 between 1987 and 1994.
Lundgren said that when he started, people did not think a donkey digging a hole was worthy of scientific attention.
The animal was listed as a threat to the desert's water.
It was the one bringing the water up.
Fifty-nine species knew.
The ones with the rifles had never sat by the hole.
PF (Patricia/Pat) Anderson retweeted
Hayao Miyazaki on modern anime, via Roland Kelts the author of 'Japanamerica'
"Hayao Miyazaki said to me at one point: 'The problem with young anime artists today is that the only thing they study is anime. When we were young, we studied French literature, we studied impressionism, we read Dostoevsky. We swallowed everything. And then we went and created original anime. But if you grow up and all you watch is anime, you're just regurgitating spinning wheels.'"
He also spoke about his work on the upcoming documentary 'Tezuka! God of Manga'
PF (Patricia/Pat) Anderson retweeted
So, Terry Pratchett was once asked what books aspiring fantasy novelists should read if they hope to write great fiction. His advice was telling. He encouraged authors to avoid reading much of what passes for contemporary fantasy (what he called “Extruded Fantasy Product,” derivative of Tolkien). “Do not write it,” he said, “and try not to read it. Read widely outside the genre. Read about the Old West (a fantasy in itself) or Georgian London or how Nelson’s navy was victualled or the history of alchemy or clock-making or the mail coach system. Read with the mindset of a carpenter looking at trees.”
Any great fantasy series you can name, from Star Wars to Narnia to Discworld, was written by authors who read voraciously, who read old books and loved old myths, whose minds were so steeped in history and folklore and obscure pulp fiction that they couldn’t have written derivative works if they had tried. We’ll only have great fantasy in this century if we can recover the reading habits of the authors of a previous era.
Hayao Miyazaki on modern anime, via Roland Kelts the author of 'Japanamerica'
"Hayao Miyazaki said to me at one point: 'The problem with young anime artists today is that the only thing they study is anime. When we were young, we studied French literature, we studied impressionism, we read Dostoevsky. We swallowed everything. And then we went and created original anime. But if you grow up and all you watch is anime, you're just regurgitating spinning wheels.'"
He also spoke about his work on the upcoming documentary 'Tezuka! God of Manga'
PF (Patricia/Pat) Anderson retweeted
I'm 52 years old. I have terminal Stage IV esophageal cancer. And my life has become something I never could have imagined.
I have metastatic adenocarcinoma with signet-ring features. It's spread to my liver, lymph nodes, stomach and peritoneum. The surgery that was supposed to potentially save my life was aborted when they discovered it had already spread.
I've been through chemotherapy. I've had a stent shoved down my esophagus just to help me swallow. I've lived with a feeding tube. I've had to rethink something most people never give a second thought to: eating.
A cheeseburger. Pizza. A normal meal with my family. Things that used to be completely ordinary have become things I miss.
Every meal is a calculation. Calories. Protein. What can I swallow? What will hurt? What will stay down? How much can my stomach tolerate?
I deal with nausea, abdominal pain, strange sensations throughout my torso, swallowing difficulties, and the constant uncertainty of what is happening inside my body.
I monitor blood markers. I read CT scans. I research clinical trials. I look at experimental treatments and scientific papers, trying to find something, anything, that might give me more time.
And there's a particularly cruel part of terminal cancer that people don't always understand:
You can look relatively healthy. You can walk every day. You can laugh, read, have conversations, research things, and make plans. Meanwhile, you know there's an incurable disease growing inside you.
You become acutely aware that the future everyone else takes for granted is no longer guaranteed to you.
I have a wife. I have children. I have things I still want to experience, conversations I still want to have, and memories I still want to make.
I've even started leaving little handwritten messages around the house for my wife to find someday. Things I want her to know when I'm no longer here to tell her.
I'm not writing this because I want anyone's pity.
I'm writing it because terminal cancer is so much more than a diagnosis or a statistic. It's an entirely different existence. It's fighting for your life while simultaneously trying to figure out how to keep living it.
I don't know how much time I have. Neither does anyone else.
But I'm still here. Still walking. Still researching. Still looking for treatments. Still trying to eat. Still making plans.
And I'm not done fighting.
If you're healthy, don't take the ordinary things for granted. You have no idea how extraordinary they are until they become difficult or impossible.
PF (Patricia/Pat) Anderson retweeted
People wonder why I'm so obsessed with donkeys. I've looked into it, and my only finding is that the rest of you are underdoing it.
The donkey was built for the ground where everything else gives up. It lives on thorn and scrub that a horse would starve beside, climbs rock on hooves like chisels, cools itself through those ears, and can lose nearly a third of its body weight in water, carry on eating, then drink 25 litres in three minutes and walk off as if nothing happened. We tamed it 7,000 years ago in the dry country of East Africa, and it has been the animal of the hard places ever since.
So it was the donkey, long before the horse, that carried civilisation on its back. One of Egypt's first pharaohs was buried at Abydos with ten donkeys laid in graves beside him, every spine worn from a lifetime under loads. The grain, the salt, the copper and the news of the ancient world moved at a donkey's pace, and wherever a hill is still too steep for a wheel, they still do.
The same animal fed our babies. Donkey milk is the closest milk on earth to a human mother's, Hippocrates prescribed it, and the foundling hospital in Paris kept a stable of jennies so the orphans could be put straight to the udder. A fair share of Europe's abandoned children owe their first month to a donkey, and most of those donkeys carry a dark cross down the back and across the shoulders, which the old story says was given to them on Good Friday.
It carried our wounded too. On the beach at Gallipoli a stretcher-bearer from South Shields found a stray donkey, and for 24 days the two of them walked up and down Shrapnel Gully under fire bringing broken men down to the boats, until a machine gun got the man. The donkey went back up with the next one. Of everything the Anzacs brought home from that campaign, the thing they chose to remember was a donkey.
Then there is the stubbornness, the one fact everybody is sure of, and it is the opposite of the truth. A horse meets danger by bolting, which is why horses die on cliff paths. A donkey stops, looks at the thing in front of it, and makes a decision, and it will refuse to step into water it cannot see the bottom of because it is right not to. For 7,000 years we have been calling a risk assessment an attitude.
Put one in a field of ewes and it appoints itself. A fox or a loose dog comes through the hedge and the donkey goes at it, head down, front feet first, and keeps going until the thing has gone. Nobody trains that in. It decided they were its sheep.
It remembers a face and a field after 25 years. It will stand over a dying companion for a day. It lives to 40 and outlasts half the people who ever owned it.
There are about 50 million of them alive, carrying water, firewood and children for the poorest people on earth, and close to 6 million a year are now killed for their hides, boiled down into a gelatine sold as a tonic. The animal that did the most work for the least thanks is being melted into a wellness product.
Seven thousand years of hauling us uphill, feeding our orphans and carrying our wounded, and the best we managed in return was to turn its name into an insult.
So no. Not nearly obsessed enough.
Jon Ossoff was 16 when he finished reading John Lewis’s memoir and wrote him a letter. He asked if he could interview him, spend some time with him, anything that would let him learn from the man whose book he had just read. He didn’t expect an answer. Lewis wrote back and invited him to work in his congressional office.
There was something about that letter Lewis would have understood. He had written one himself at 17. A college near his home in Alabama had never answered his application, and Lewis wanted to challenge its segregation. He wrote to Dr. Martin Luther King Jr. without telling his parents or his teachers. King did not just write back; he sent Lewis a round-trip Greyhound ticket to Montgomery so they could talk in person.
Oh my!
The first time Lewis and Ossoff sat down for a meal, Lewis spent about an hour and a half telling him about the rabbis and Jewish activists who had marched alongside him in the South. Ossoff was a Jewish kid from Atlanta. He knew from the book what had happened to Lewis on the Edmund Pettus Bridge in Selma, where a state trooper fractured his skull during a march for voting rights. Now Lewis was telling him who had walked beside him.
The internship lasted a few months. The friendship lasted 17 years. In 2017, when Ossoff ran for Congress and lost, Lewis was there on election night. A reporter saw him sitting in a small room next to the party, looking out into the room. Later that night, Lewis came out and told the crowd how glad he was that he had answered the letter Ossoff sent him in high school.
Lewis died in July 2020, six months before Ossoff won his first Senate race. When Ossoff took the oath of office, he had copies of two old passenger lists in his jacket pocket. One recorded his great-grandfather Israel’s arrival at Ellis Island in 1911. The other recorded his great-grandmother Annie’s arrival two years later. In his hand was a book of Hebrew scripture that had belonged to Rabbi Jacob Rothschild, who led the Atlanta synagogue where Ossoff had his bar mitzvah (this is a Jewish coming-of-age milestone for a boy, usually at age 13).
In 1958, white supremacists had bombed that synagogue. Rothschild and his wife, Janice, grew close to Martin and Coretta Scott King in the years afterward. Janice lived long to see Ossoff take the oath with her late husband’s book
This week, Georgia reelected 39 year old Jon Ossoff to the United States Senate. At his victory speech in Atlanta, he thanked his wife, Alisha, and their daughters, Eva and Lila. Then he talked about a conversation he expects to have when Eva is older. He imagined her asking what he did when people were losing their health coverage and voting rights were under threat. He told the crowd what he hoped he would be able to say to her.
“The year you turned five, Georgia sent me back. Here is what we did with the time they gave us.”
Isitoshe,
After his win in Georgia, Jon Ossoff is now the prediction markets’ favorite to win the Democratic presidential nomination in 2028. He has the gift of gab and, some women are saying he is easy on the eye. But if he runs, the first test will be South Carolina, where Black voters helped turn Joe Biden’s campaign around in 2020. Ossoff will have to make his own case to those voters and when he talks about John Lewis there, he will tell them about the man who wrote back to him at 16, sat down with him over lunch, and was still in his corner the night he lost his first race.
May the day break
mecfsmed.de ist Geschichte.
Vor Kurzem wurde die Seite gehackt. Beim Aufräumen ist mir klar geworden, dass mir die Ressourcen fehlen, sie neben meiner eigentlichen Arbeit sicher weiterzubetreiben. Den Angriff nehme ich als Zeichen, einen Schlussstrich zu ziehen.
PF (Patricia/Pat) Anderson retweeted
Ich habe mecfsmed.de eingestellt.
Das Verzeichnis war mir ein Herzensprojekt. Ich habe es aufgebaut, weil ich selbst erlebt habe, wie schwer es für Betroffene ist, Ärztinnen und Ärzte zu finden, die ME/CFS ernst nehmen. Jeder Termin in der falschen Praxis kostet Kraft.
Mit dem Verzeichnis kamen aber auch viele Probleme und Widerstände. Der Hackerangriff vor Kurzem hat mir dann gezeigt, dass mir die Ressourcen fehlen, die Seite neben meiner Arbeit sicher weiterzubetreiben. Ich nehme das als Zeichen, loszulassen.
Was mich tröstet: Die Arbeit ist nicht verloren. Die Daten sind in medoctors.org von @liamsLCjourney eingeflossen, ein weltweites Verzeichnis, in dem Patient*innen ihre Erfahrungen mit Ärzt*innen und Kliniken teilen. Ich finde das Projekt sehr unterstützenswert und freue mich, wenn ihr es nutzt und eure Erfahrungen dort eintragt.
Danke an alle, die mecfsmed.de in den letzten Jahren genutzt, geteilt und unterstützt haben. 💛
mecfsmed.de ist Geschichte.
Vor Kurzem wurde die Seite gehackt. Beim Aufräumen ist mir klar geworden, dass mir die Ressourcen fehlen, sie neben meiner eigentlichen Arbeit sicher weiterzubetreiben. Den Angriff nehme ich als Zeichen, einen Schlussstrich zu ziehen.
PF (Patricia/Pat) Anderson retweeted
The song is considered to be one of the most difficult arias ever written for a soprano. And yet she makes it look so easy, and with such power.
And she was only 17 years old when she performed it.
PF (Patricia/Pat) Anderson retweeted
It feels like removing a dagger from my leg.
Headache. Dysphoria. Flatness. Hearing phantom iPhone dings in my sleep.
Days 1-3 were more of a rush. I felt light and free.
On day 4, the withdrawals began. I've never had to kick something like this before.
Screens are a legit addiction.
I'm curious to see if the month 6 PET scan shows enhanced metabolism in regions that improve in drug addicts who quit like the thalamus, frontal cortex, and striatum (reward circuit).
There are no PET studies of people quitting screens, so Dr. Eber and I are breaking new ground.
Image attached is baseline PET (F18 tracer). That's one of a few scans I'm tracking.
Day 6/365
Sent from my screenless phone
Follow this guy. He’s about to spend an entire year without looking at a screen, while tracking his biomarkers and overall health to see what changes.
It feels like removing a dagger from my leg.
Headache. Dysphoria. Flatness. Hearing phantom iPhone dings in my sleep.
Days 1-3 were more of a rush. I felt light and free.
On day 4, the withdrawals began. I've never had to kick something like this before.
Screens are a legit addiction.
I'm curious to see if the month 6 PET scan shows enhanced metabolism in regions that improve in drug addicts who quit like the thalamus, frontal cortex, and striatum (reward circuit).
There are no PET studies of people quitting screens, so Dr. Eber and I are breaking new ground.
Image attached is baseline PET (F18 tracer). That's one of a few scans I'm tracking.
Day 6/365
Sent from my screenless phone
PF (Patricia/Pat) Anderson retweeted
Incredible to see this $15M philanthropic investment into @polybioRF & the complex chronic illness space. Thank you @pagsceltics and family for supporting innovative research. This is how the needle gets moved and people receive meaningful help - with substantive funding dedicated to high quality research that begins to match the scale of those impacted.
WCVB: 'Philanthropist, former Celtics co-owner Steve Pagliuca backs $15M long COVID research effort'
"It’s really hard to watch if one of your children is sick and one of your friends is sick," Pagliuca said. "And so this really needs to be done."
wcvb.com/article/former-celt…
PF (Patricia/Pat) Anderson retweeted
"Acts of compassion during a period of trauma may last a lifetime in a person’s memory."
Brian Kulp describes the lasting effects of compassion and humour from healthcare professionals during a medical emergency
bmj.com/content/395/bmj-2026…
PF (Patricia/Pat) Anderson retweeted
‼️ The same rules apply in outpatient setting and chronic illness management. 🩺
✔️ Believe the patient! (Yes, they really DO have 30 symptoms. Yes, they really DO have fatigue that severe. Yes, they really DO have brain fog that impairs work/school.)
✔️ You may not understand what's going on with your patient as a physician and a fellow human, but you should avoid judging your patient as "crazy," "anxious," "not right in the head."
✔️ Practice compassion and hopeful-realistic attitude. You should avoid making promises for a cure, but also avoid hopeless statements like, "There is nothing we can do for you," OR "Only a good psychiatrist/psychologist can cure you."
"Acts of compassion during a period of trauma may last a lifetime in a person’s memory."
Brian Kulp describes the lasting effects of compassion and humour from healthcare professionals during a medical emergency
bmj.com/content/395/bmj-2026…






























