News from the USA, United States of America

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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Dolphin said:
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
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I transcribed some snippets from all the guest speakers:

David Penn
Hi, I'm David Penn. I'm a family medicine physician here in Anchorage and hospital physician. I'm going to talk to myalgic encephalomyelitis/chronic fatigue syndrome. I'm not an expert. In fact, there's very few experts in the country. There's none in the state and a few in the world.
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It's unknown to most of the population, and it's unknown in the medical community as well. I'm a physician and I didn't know about it when my own partner became ill with the disease. It took a few years to get the diagnosis.
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Those episodes of post-exertional malaise have the capacity to lower one's baseline, and so one of the key things one has to do is avoid entering into post-exertional malaise episodes, and the only way to do that is through knowledge. So this proposal has the ability to improve people's lives and improve functional capacity among people who end up with this disease.
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The date of May 12th was selected by an American advocate in the early 90s. It correlates with the birthday of Florence Nightingale: amongst other things, the founder of modern nursing. She actually, later in her life, acquired a chronic neuroimmune disease and was bedridden. Medical historians believe it was likely ME/CFS.
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Hollis Mickey
I've lost my life thriving here in Alaska as an educator, an arts administrator, a practicing artist, as well as a professor at UAA. I biked to work and hiked every weekend in the summer. I was an avid amateur skiier in the winter. But five years ago everything changed, and now any significant cognitive effort, like presenting now, writing or reading an email, can trigger the escalation of symptoms that can last for hours, days, and even weeks. [...] Despite the devastating nature of this disease, patients like me often have to navigate their healthcare on their own, due to the significant lack of awareness in both the medical profession and wider community of this disease.
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Sallie Rediske
In the near 50 years of me having this, I've only run into three healthcare providers, other than the two ME/CFS providers that I see outside, that have even known what the name meant. And none of the three actually knew what to do with it. So this is a very powerful opportunity to begin to remedy this situation for a NOT rare illness that is rarely diagnosed, and begin to give Alaskans an opportunity to receive management strategies here in the state.
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Donna Aderhold
Many in my community are surprised to learn I'm dealing with health issues that affect my ability to think and function. When I'm out in the world I look fine. What people do not see are the days I'm unable to get off the couch or complete a simple sentence. On those days, I hide from the world. I plan my life around this illness.
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Simonetta Mignano
[My friend] was forced to detach herself physically from every aspect of her life in order to manage the effects of this disease. It was horrifying, and still is, to see her struggle.
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Michael Dickerson
[Referring to previous speaker Hollis] I've seen her unable to enjoy most of the creative efforts for which she has been deservedly recognized. Her pain and loss are acute and chronic, but so is the loss of her wise leadership in her community, her unique voice as an artist, and her encouragement and support as a friend. I'm not alone in lamenting the loss of this one member of our community to ME, but the cost of this disease to society extends well beyond arts and education, well beyond Alaska. Millions of people suffer from ME, so it is fitting that we pay attention to them.
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Francesca DuBrock
I went from having a vibrant friend and colleague, to watching her decline visibly over the summer of 2022. [...] I haven't seen her since a brief visit we had in her driveway in the summer of 2023. In the intervening years, I have watched her struggle with an excruciating series of treatments that worsened her overall baseline and caused untold anguish. Friends, family, and carers are faced with a horrible sense of powerlessness in the face of so many unknowns and the lack of research and treatment for this disease.
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Mercedes Harness
My child's health challenges began escalating a year ago after two previous years of being sick, we sought diagnostics and treatments across Alaska. I was repeatedly told that kids get sick a lot. Our concerns were routinely minimized. Listening to all the speakers today, I'm realizing that my child is ten, and she's lost her childhood from being home sick.
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Sara Tabbert
I now have two friends of widely different ages, living in different parts of the country, experiencing different severity of the condition, who are both in need of much more support and understanding than they're able to find. I'm old enough now to have watched a number of friends and family members struggle with devastating conditions from cancer to severe mental illness to AIDS. I have to say that seeing someone with severe ME may be the hardest to watch. There's no relief, there's little understanding, and as a friend, the things that you might normally do to comfort or help only run the risk of making them sicker.
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Disability Network West Michigan: "Let's talk Long COVID: Part 1" with Dr. Walter Koroshetz, NINDS, Dr. Katharine Seagly, Director of the Traumatic Brain Injury, Univ. of Michigan & Becca Squires, clinical social worker - Univ. of Michigan, program coordinator, post-COVID and Concussion clinic

Koroshetz: "You look at the symptoms that people with Long COVID have and then you look at the symptoms for..ME/CFS, there's a gigantic overlap"

"We have a lot of work to do"

"Our Institute & the National Institute of Allergy infectious Disease been working on ME/CFS for a couple of decades - no one's been able to figure out what causes this chronic illness in people who had an infection & then never get better from it so so we got worried right away"

"We would not leave any stone unturned and we'd be looking everywhere we could possibly look at to try and get an answer to this
problem hoping that someone else is going to get it quicker.."

"I want to talk a little bit about what we think might be going on but as I said we don't know exactly what's going on yet to cause this chronic illness these are the main theories...one of them could be persistent viral infection due to the virus it just really doesn't go away it's hiding..somewhere in the body..one possibility is that COVID activated another virus - culprits here is Epstein-Barr virus which causes infectious mononucleosis...and the other one is that the immune system was was pushed to respond to the virus and it kind of pushed it over the cliff and now your immune system is not working normally - it's not resetting..."
 
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Join us for Dysautonomia Advocacy Day!

Dysautonomia International invites US patients, family members, clinicians, researchers and allies to join us in Washington, DC on Wednesday, May 7th, 2025 for Dysautonomia Advocacy Day on Capitol Hill. There is a mandatory training in DC for all advocates on the evening of May 6th.
LINK
 
(~20 min audio segment)

Colorado Public Radio News (CPR): 'Long COVID; The ongoing battle'

'...we look at the lasting impact of long COVID in Colorado...Dr. Sarah Jolley from the UCHealth Post-COVID Clinic discusses treatment options and the uncertain road to recovery...Denver7’s Oscar Contreras shares his personal struggle, detailing ongoing symptoms… '

Extracts:

Contreras: “writing news stories, which usually take 5-10 minutes now take 30-40 minutes…like a wall in my brain. Thoughts that couldn’t come out from my brain to the keyboard....I didn’t know what Long COVID was..it never occurred to me…going to the doctors, all these type of brain scans, they see nothing wrong…”

Hosts: “what can we do - society, what can we do to better support?

Contreras: “I think it’s a systemic issue…it needs to starts with governments, with public health officials…they are not informing the public that this condition can have…”

Jolley (of RECOVER): "I would say the most common symptoms we see are long-term fatigue, brain fog..long-term heart effects including palpitations.."

"We are also, luckily, in a phase of doing clinical trials where we have therapies that are starting to be targeted at the mechanisms of Long COVID - things like persistence of virus, immune dysregulation - we will hopefully have those trials coming out with results in the next 6 to 12 months, which will really advance our therapies"

"We have learned a ton in 5 years. More than I think we expect in biomedical science, in part because of the response and attention that's been put to Long COVID. We've learned a lot about the foundational biology and that biology is now actually helping us to do clinical trials with targeted therapies, to be able to hopefully be able to really improve the lives of patients with Long COVID...we certainly have much more to learn, but we've learned a lot in 4 years.."

"..we're also doing a lot across the state to help primary care providers help understand Long COVID more so that patients can hopefully get treatment in their home communities as well..."
 
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