News from the USA, United States of America

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Science Translational Medicine: “Don't miss our webinar on #LongCovid, taking place tomorrow, 21 February at 1:30 p.m. ET.

Join @AndreaCoxMDPhD, @VirusesImmunity, and @MichaelPelusoMD as they discuss the latest discoveries, candidate drivers and heterogeneity, and emerging therapies: scim.ag/4jWzBQU”
 
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New York Times: 'The Interview: Ed Yong Wants to Show You the Hidden Reality of the World'

'...his Covid journalism — which documented the earliest stages of the pandemic and made him one of the first chroniclers of long Covid...established Yong as a key and trusted public interpreter of the illness and its many ripples...'

'..I know that the cost of long Covid is real and substantial..'
 
Sharing for sight

“Notice to providers after Minnesota child develops rare brain inflammation linked to flu”

‘The Minnesota Department of Health recently issued a notice after a child under the age of two was diagnosed with a case of acute necrotizing encephalitis (ANE), associated with influenza A.“

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CBS: “Health department warns Minnesota hospitals about rare flu-related brain inflammation”

Minnesota health officials are warning health care facilities after a Twin Cities child with the flu developed a case of rare brain inflammation.
 
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STAT: 'A small study on Covid vaccine safety sparks an online tempest’

'A group of researchers last week released a small, preliminary paper theorizing that Covid-19 vaccines may be linked in rare cases to a constellation of lingering symptoms not dissimilar to those associated with long Covid.'

'They intended for their work to be the subject of academic discussion and to spur further study of what they dubbed “post-vaccination syndrome.” Instead, it has exploded online — and become a parable for the ways in which the internet is being used to weaponize basic vaccine research vital to advancing scientific knowledge about the safe use of these key products.'

Elon Musk, the world’s richest man, and the owner of X, reposted one such claim to his 218.7 million followers.

“Oh, no! Really?” groaned an evidently dismayed Iwasaki, when told Musk had amplified a post on X alleging the study proved long Covid is caused by Covid vaccines. “I don’t want anyone to conflate the two different syndromes in one bucket. That is not the message we’re trying to convey.”
 
Dakota15 said:
'These chronic infections in people who are immunocompromised are distinct from long COVID, which doesn’t necessarily involve continual shedding of virus'
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Glad this is being understood.

It seems much of the patient community has unfortunately assumed Long COVID must equal chronic viral infection which is really no where close to being proven.

Perhaps the name “Long COVID” is partially to blame, it’s even worse in Spanish in my opinion “persistent COVID”.
Maybe it’s time to slowly pivot to “Post COVID (conditions)”, which is clear its not necessarily an elongation of the viral infection, and that its heterogenous and can include different conditions.
 
2/13/25, Johns Hopkins: 'Standing up to POTS'

'Devastating in its impact, postural orthostatic tachycardia syndrome is on the rise. A Johns Hopkins team is leading efforts — in the clinic and at the lab bench — to improve life for patients with this complex condition.'

Tae Chung, director and founder of the Johns Hopkins POTS Program, concurs. “It’s a very disabling condition,” he says

“Our program at Johns Hopkins has been at the vanguard of clinical trials for POTS,” says Chung, who has served as lead principal investigator for two recent trials that examined drugs aimed at improving outcomes for patients with post-COVID POTS, one of which was a multicenter phase 2 trial. “We have a couple more clinical trials scheduled to start in a few months,” he adds.

“We think about 40% of patients with POTS develop it after some type of acute infection, including chronic Lyme disease or long COVID,” says Chung, while the majority — about 50% — have POTS that is caused by an autoimmune disorder, including lupus, Sjögren’s syndrome or celiac disease.
 
Chicago Tribune: 'Letters: Gutting of federal health agencies has consequences for patients with chronic illnesses'

'You see, I am the full-time caretaker of my 26-year-old son, Gabe, who has spent more than one-fifth of his life bed-bound with myalgic encephalomyelitis, or ME, an infection-associated chronic condition and illness, or IACCI.'

'According to World ME Alliance, 17 million to 30 million people across the world are estimated to have ME. Many go undiagnosed because there is only a handful of true experts. There is no treatment approved by the Food and Drug Administration or cure for ME. For most ME patients, it is a lifelong condition, with a 5% recovery rate, according to the World ME Alliance. Another sobering fact is the economic impact: up to $362 billion in the U.S.'

'ME and other IACCIs have been grossly underfunded and under researched for decades by all administrations, but now the health agencies have been depleted by President Donald Trump, what hope is left? How can these patients and millions of other Americans with all variety of illnesses ever dream of a cure or treatment that can give them back their lives?'
 
Yale Alumni Magazine, Mar/Apr 2025: 'Lisa Sanders is on the case'

'Lisa Sanders ’97MD is medical director of the Yale Long COVID Multidisciplinary Care Center. But chances are you are more familiar with her New York Times Magazine column, “Diagnosis,” which presents vexing medical cases as mysteries to be solved. This format inspired the eight-hour Netflix docuseries Diagnosis, on which Sanders collaborated, as well as the TV show House starring Hugh Laurie.'

Sanders: 'Post-infectious syndromes, which have been with us since the beginning of time, have never really gotten the attention they deserve.'
 
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People: 'Some People Have Rare Reactions to the Covid Vaccine — and Researchers Want to Know Why'

'Yale researchers have found "differences in immune profiles" among those who struggle with negative reactions to the Covid vaccine'

The statement notes that spike protein levels are also associated with long Covid, and Iwasaki says that there are treatments that could help: “Maybe we can remove [the protein]— with monoclonal antibodies, for example — and maybe that could help reduce PVS symptoms"
 
forestglip said:
There's also a video clip on the page from this story airing on their TV channel. It has snippets from a couple moving testimonies from a patient and a parent.

"I'm realizing that my child is ten and she's lost her childhood."

They also used a chart from CrunchME:
View attachment 25468
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Watch the full 40-minute ME/CFS testimony (includes a patient, parent, doctor and possibly others) to the Alaskan Congress hearing here
https://www.akleg.gov/basis/Meeting/Detail?Meeting=SHSS 2025-02-11 15:30:00

https://twitter.com/user/status/1894851383066812498
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