News from the USA, United States of America

9/23/23, 'Life in the ICU with Critical Care Pulmonologist Dr. Wes Ely'

Ely: "A lot of the patients who get this rapidly acquired brain dysfunction now are long COVID patients who never got sick. They were mildly sick with COVID and then three to six months later, they have this, this massive onset of cognitive impairment that looks a lot like a dementia."

"I think that those patients who go through it...that's who's going to drive medicine society to do a better job of fixing things."

"We are now doing a lot of research in Long COVID to help people find answers and to pick up the pieces of their life."

 

1/27/22, 'Rebuilding What We've Lost in Covid: A Perspective from the ICU'

Ely: ‘So this post-intensive care syndrome, coupled with long COVID by the way, is a very real, life-altering public health problem for these patients..'

"We have a public health problem on our hands. And it's of a very large magnitude, in that millions of people are going to have PICS and long COVID or both.."

"We need to start calling it what it is, so that people can feel some identity of what they're carrying around with them. And then in clinics, we're gonna have to equip our primary care workforce to be reimbursed well, to have billable time for these people because they're gonna require talking time. I think we have to rethink this issue of not reimbursing people for the amount of time they spend with these patients. Because without answers to how to cure long COVID, what do we have to offer? Ourselves. And the fact that we're willing to listen, and I won't abandon you, a compassionate statement. I don't know what long COVID is just yet, in you. I don't understand your suffering, but I won't leave you. And that takes time. And so the clinician is gonna have to reimburse for that."

 

(Assuming many here have already seen previously but for advocacy purposes I thought would be wise to share for sight. I also acknowledge that Hillary doesn’t come without controversy in the community historically, but still felt relevant to leave here)

5/7/22, RFK Jr Podcast: “Biomedical Research Gone Awry with Hillary Johnson”

“People have no concept whatsoever of how terrible this disease is (ME).”

“I've watched for literally decades now, the CDC and the NIH, especially the NIH…They've exerted a tremendous, tremendous desire to control the information about this disease..”

“That is shocking and appalling to think that one out of every 100 people is suffering from this absolutely devastating, disabling disease”

“Anything under $10 million or $15 million at NIH is considered fairy dust. Literally, those are rounding up numbers. That's how small the money is.”

“This is a chronic problem because NIH has a budget of $42 billion a year.”

(RFK) “…the medical system tortures people who have this diagnosis of gaslighting them, of dismissing them, of running them, making them pariahs. And these people were enduring, mainly women, this terrible, terrible suffering. And it just compounds it. We need to mention that.”

 

Maybe not so much news as interesting because it was posted as news, and then what happened. An article was posted 2 days ago on the /r/news sub-reddit about the growing evidence of COVID's harm on the brain, significant drops in IQ and so on.

The thread is filled with people saying they're noticing it personally, and around them. Loads and loads of them. But in less than 24 hours the thread was locked by moderators. I haven't seen an explanation. This forum is very general and doesn't have rules against health news or anything like this. Discussion was definitely civil and on topic. It's hard to see why it was locked.

But the sheer amount of comments is very telling. With basically no minimizing ones I can see. That usually only happens when the discussion is wholly organic, with too many real accounts posting for actors trying to steer things one way or another. It's a generic grand audience sub, basically about as unlikely to be biased in favor or against something like it. Brain fog is what's mostly discussed. I didn't see much going on the other issues with COVID, definitely not a discussion steered by several long haulers trying to raise awareness, which happens sometimes on threads with few comments that allow a few denying voices to dominate.

Mounting research shows that COVID-19 leaves its mark on the brain, including significant drops in IQ scores

 

12/1/24 - Harvard Health: 'The latest on long COVID'

'To help answer some of the more common questions about long COVID, we turned to Dr. Michael VanElzakker, a neuroscientist and long COVID researcher at Harvard-affiliated Massachusetts General Hospital'

 

Medscape, by CDC Director Mandy Cohen: 'This Holiday Season, Protect Yourself and Your Patients'

'As we continue to study long COVID and research possible treatments, the vaccine remains the best protection against long-term illness'

https://www.medscape.com/viewarticl...otect-yourself-and-your-patients-2024a1000lah

 

11/22/24, Newsweek: 'Map Shows US States With Highest Levels Of Long COVID'

'Around 400 million people worldwide are believed to have long COVID, and 17.8 million of those are in the U.S., according to medical journal JAMA.'

"We now know that a significant proportion of long COVID patients have evidence for ongoing immune activation, including abnormalities of blood proteins called complement, dysregulation of blood clotting pathways, and activation of endothelium, which lines blood vessels, PJ Utz of Stanford said, adding that this could be linked to cardiovascular disease and brain disease.'

'Discussing future development of long COVID treatment, the Stanford professor said that the "pace of research on long COVID is incredibly fast."

 

11/22/24, Northwestern Medicine: 'New research shows younger & middle-aged adults have worse long COVID symptoms than older adults'

“Long COVID is causing an alteration in patients’ quality of life. Despite vaccinations and boosters, about 30 percent of COVID patients develop some long COVID symptoms. These findings have an immense public health impact, given that long COVID significantly contributes to the leading global burden of disability and disease caused by the neurological disorders.”

“The impact of long COVID is causing disproportionate morbidity and disability in younger adults in their prime who provide much of the workforce, productivity and innovation in our society..this may have a negative impact on the economy and cause additional burden on the health care system. This study highlights the importance that people of all ages suffering from Long COVID should be provided with the necessary treatment and rehabilitation services to alleviate their symptoms and improve their quality of life.”

- Igor Koralnik, MD, chief of neuroinfectious diseases and global neurology at Northwestern Medicine, who oversees the Neuro COVID-19 Clinic and is the co-director of the Northwestern Medicine Comprehensive COVID-19 Center.

 

Cincinnati Enquirer: “At 400 million patients and counting, long COVID remains a mysterious affliction”

"There's a lot we don't know about long COVID," said Dr. Grant Mussman, medical director of the Cincinnati Health Department

https://www.cincinnati.com/story/ne...nd-doctors-still-seeking-answers/75811907007/

 

Cincinnati Enquirer: “A long COVID story: Why we told the story of a man's battle with the mysterious condition”

“They shared their story, which appears in today's Enquirer..a reminder to those who are suffering with long COVID that they are not alone”

https://www.cincinnati.com/story/ne...ea-mans-struggle-with-long-covid/75828260007/

 

Cincinnati Enquirer: “A long haul with long COVID: Why poor and middle income Americans are hit hardest”

“I can’t tell you how many people are couch surfing or living in cars,” said Delainne Bond, a Florida nurse…

https://www.cincinnati.com/story/ne...d-middle-income-americans-harder/74921941007/

 

NPR: 'Long COVID patients push to see federal research refocused on treatments'

"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign

"What [RECOVER] lacks, really, is clarity of vision and clarity of purpose," says Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate another $515 million of funding for long COVID research, which it says will have a significant focus on clinical trials. At the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is, "to work rapidly, collaboratively, and transparently to advance treatments for Long COVID."

This turn suggests the NIH has begun to respond to patients and has stirred cautious optimism among those who say that the agency's approach to long COVID has lacked urgency in the search for effective treatments.

NPR contacted the NIH several times to ask about plans for this new chapter of RECOVER. The agency did not make anyone available for an interview, nor would it answer written questions via email.

Good science takes time, says Dr. Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long COVID — clinical trials are needed. And that requires money.

RECOVER's deadline to submit long COVID research proposals is Feb. 1.

More on RECOVER here: USA: The RECOVER Initiative - Long Covid research

 

New York Times: 'A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves'

'For people with debilitating long Covid, the new year heralds a cruel anniversary: Some are experiencing their fifth year with the agonizing illness. And despite the roughly $1.6 billion that the National Institutes of Health has received for long Covid research, not a single drug has yet been approved for that purpose. Amid this frustrating delay, the Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds and directing them to promising research projects — and punching far above its weight.'

One baffling long Covid symptom that the survey brought to light was what’s known as post-exertional malaise.

They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.

The lead author, Rob Wüst, is a young scientist in the Netherlands who not only studies exercise but also participates in it daily. He told me he had always thought that exercise was good for everyone, even those suffering from a chronic disease. But when he received a call from a long Covid clinician looking for answers, he was ready to jump in.

McCorkell told me that the success of the group’s first round of research funding proved the value of having patients involved in these funding decisions — and in circumventing the lumbering medical bureaucracies that have taken much too long and accomplished much too little.

That’s why I invite you to donate to Patient-Led so it can do so again.'

 

Radiological Society of North America: 'Long COVID Brain Fog Linked to Lung Function'

'Researchers from the University of Iowa in Iowa City set out to assess associations between pulmonary MRI gas exchange, structural and functional brain MRI, and cognition in long COVID patients'

'The results showed that lower pulmonary gas exchange may be associated with cognitive dysfunction, as well as lower gray matter and white matter volumes in patients with long COVID. In addition, the researchers observed significant relationships suggesting that increased cerebral blood flow is associated with decreased gas exchange in long COVID patients.'

Staab said larger studies are needed to investigate the association between gas exchange and cerebral blood flow in long COVID.

"This relationship could be a compensatory mechanism where lower lung function is compensated by higher cardiac output and higher brain perfusion," he said. "It's also a possibility that the disease mechanism that impairs pulmonary gas exchange also leads to higher brain perfusion through downstream vascular injury in both lung and brain."

 

Healio: 'Post-exertional malaise assessment ‘becoming more important’ for long COVID in rheum care'

“Post-exertional malaise is the worsening of fatigue & other fatigue-related symptoms after exertion,” Kaleb Michaud, MD, Univ. of Nebraska Medical Center

“Post-exertional malaise assessment is becoming more important in those with long COVID, as we are assisting those with long durations of this condition,” Michaud said.

Michaud described the associations between post-exertional malaise, disease activity and COVID-19 as “important,” but said further research is needed. “They require additional understanding,” he said

 

11/26/24: “American Lung Association Awards Charlottesville Researcher Grant to Study COVID-19”

“This research could significantly enhance the understanding of the cellular and molecular basis..could lead to new ways to prevent or treat..long COVID”

“The American Lung Association in Virginia announced that it awarded In Su Cheon, PhD from the University of Virginia a $50,000 Catalyst grant, renewable for an additional year for a total of $100,000.“

"Dr. Cheon’s research aims to understand how certain immune responses can lead to chronic lung conditions after viral pneumonia, like COVID-19. Dr. Cheon and others have identified a novel immune cell population, called CD4+ tissue-resident helper T cells
which stays in the lungs and helps fight off secondary viral infections."

 

Unfortunately, there is a wildly popular alternative to science, which medicine loves even more than science. And it strongly reinforces this demand.

I noticed from recent days a study, I think from the Netherlands, from which followed some critical coverage of how LC patients are resorting to alternative medicine and all sorts of dubious quackery. And then you look at what medicine, and the health care systems, have been pushing for years and there is zero difference, including in messaging and framing. I think it even has the acuseeds crap. And yoga, of course. But even though many MDs will criticize this, they never clue in that they promote the exact same thing.

Hard to see the patient community not falling for this trap when most experts are the biggest cheerleaders. MDs seem to have mostly abandoned scientific research as a way out of this. Too long, too hard, might as well just have a sing-along looking at pictures of pets doing yoga. It makes no difference to them anyway. They'd rather fail and blame TikTok and social media than do the kind of real work that demands that they do work on themselves.

In the end it's like how mask mandates have become "I'm not wearing a mask, I'm not forced to". Which means the only way out is to force them to do things they don't want to do. But there is no way to do this, and they would oppose it far stronger than they have opposed sacrificing millions of vulnerable people, which they have basically not opposed at all. We're at some nexus of decades of failure and kicking the can down the road, but they still won't do it. They'd rather push CBT and forcing disabled people to work when they can't than change anything.