News from the USA, United States of America

a paper by two U.S. physicians who became long COVID patients, documenting their own stories and calling for better understanding and support

Over these 3 years, I have seen many specialists and engaged in continuous efforts to evaluate different medications, therapies, and lifestyle changes to improve my health. Much of this response was driven by the dedicated study and compassion of my physicians. Some of it was driven by ideas mentioned on social media or in patient support groups. I began to finally understand the value of these forums for patients like me who were not finding complete symptom relief despite the best medical efforts.

(No mention of ME/CFS.)
 
Lookout Santa Cruz: 'I’m one of the unknown number of people battling long COVID. We need to do more to understand this life-changing affliction.'

'UC Santa Cruz professor Rebecca A. London is among an estimated 7% to 30% of those infected with COVID-19 to develop post-COVID conditions.'

'Sen. Bernie Sanders just introduced a “moonshot” bill to allocate funds for research and education on long COVID. Yes, it’s past time.'

'Sometimes I wonder how my body could betray me to this extent because I have always treated it well. And other times, I marvel at the things it can still accomplish, even in this diminished state. And I know I am lucky – my long COVID has a diagnosis. Many others have symptoms that no one yet understands or knows how to treat.'
 
8/20, Institute for Neuro-Immune Medicine: 'Finding Treatments for Fibromyalgia and ME/CFS' with Dr. Nancy Klimas and Cort Johnson

Klimas: 'The RECOVER Network...there wasn't a large university in the country that was left out of that application. 200 applications that involved multiple institutions, 248 I think. They all went in. Everybody went in for a RECOVER application. Think about what that means. New money, a lot of money. It just swept a vast number of new investigators that weren't there before.

I will say as one of the old investigators, it left us out because there was a decision not to compare ME/CFS to Long COVID in that in that money. So, those of us that put applications in that had said - hey what we have to offer is all this experience, and data, and bio-repositories and all this stuff that we know about ME/CFS wouldn't you like to have for the compared illness? They said we can't compare them. Why? Because they said duration of illness....

Well, now it's 2024 and 2020 people are still sick right - four years of illness - you know now they're long duration illness and all of a sudden there's actually quite a bit more interest in comparing to ME/CFS - so we're doing our Long COVID to ME/CFS study that's funded by the CDC, not by the NIH. It's a good study, intended to compare ME/CFS to Long COVID, that is it's intent - that is it's main hypothesis - what are the similarities and differences. But it took the CDC to actually fund that one. We had applied through the RECOVER Network, and that's what our critique showed.

[My fault - fixed the bio-repositories edit]
 
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WYNC, 8/20: 'Dr. Fauci On A Life Of Medical Research And Public Service'

Host (on COVID being endemic): '..that means we're going to still being seeing more cases of Long COVID, and isn't that the dangerous part of this..?

Fauci: "That is true..."

Host: "So, is there anything we can do about Long COVID? What do we know about it?"

Fauci: "We don't know a lot about it. There's a lot of people working on it, there's a lot of money being poured into. It looks like it's an aberrant, uncontrolled, inflammatory immunological response to what is likely fragments of virus that persist even after the acute infection, but it's not certain. There a lot of the theories, some are more convincing than others. One of the things that's a common dominator, is that the aberrant hyperimmune response that doesn't calm down after the acute phase of the viral infection."

Our thread on Fauci is here: Dr. Anthony Fauci on Long Covid and ME/CFS
 
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8/20, Institute for Neuro-Immune Medicine: 'Finding Treatments for Fibromyalgia and ME/CFS' with Dr. Nancy Klimas and Cort Johnson

Klimas: 'The RECOVER Network...there wasn't a large university in the country that was left out of that application. 200 applications that involved multiple institutions, 248 I think. They all went in. Everybody went in for a RECOVER application. Think about what that means. New money, a lot of money. It just swept a vast number of new investigators that weren't there before.

I will say as one of the old investigators, it left us out because there was a decision not to compare ME/CFS to Long COVID in that in that money. So, those of us that put applications in that had said - hey what we have to offer is all this experience, and data, and bio-suppositories and all this stuff that we know about ME/CFS wouldn't you like to have for the compared illness? They said we can't compare them. Why? Because they said duration of illness....

Well, now it's 2024 and 2020 people are still sick right - four years of illness - you know now they're long duration illness and all of a sudden there's actually quite a bit more interest in comparing to ME/CFS - so we're doing our Long COVID to ME/CFS study that's funded by the CDC, not by the NIH. It's a good study, intended to compare ME/CFS to Long COVID, that is it's intent - that is it's main hypothesis - what are the similarities and differences. But it took the CDC to actually fund that one. We had applied through the RECOVER Network, and that's what our critique showed.
Pretty much as we suspected, they wasted 4 years by refusing to look at the forbidden knowledge. For ridiculous reasons. Not even a talking snake involved. Well OK maybe a few talking snakes but they have legs and are oddly humanoid in shape.

Probably wasted $1B in the process. I mean we saw it happen. Called it before it happened. Denounced while it was happening. Told them it would cause them to fail. And it's not going to make a difference, they're just going to excuse it and keep on failing.

What a ridiculous species we are. Overcommitted to making mistakes, rarely ever learning from them.

I'm seeing many pissed off responses from the LC community because of it, but what can they even do about it? Like all medical research it's completely opaque and secretive. Everything about us in secret behind closed doors, by them, for them. What an absurd way of doing anything.

A chuckle at bio-suppositories :laugh:.
 
KJZZ Phoenix: 'A groundbreaking study aims to determine if long COVID-19 could lead to another type of dementia'

'Dr. Marwan Sabbagh is the professor of Neurology at the Barrow Neurological Institute. He says one of the biggest complaints that people have, weeks or months after their COVID-19 symptoms have subsided, is brain fog or other issues, like memory loss.'

'So while the COVID-19 virus does not appear to cross the blood/brain barrier, "We initially thought so. Now we don't think so," he said. "But there is evidence of fragments or an inflammatory kind of a massive inflammatory response that occurs triggered by COVID. And those inflammatory markers we tend to notice in the brain."

"We are asking people to commit though. And to be clear on this, the commitment involves brain scans, PET scans, spinal tap, memory tests, twice in the span of two years," he explained. "So people who we want to sign up are people who are really committed to helping us find the answer to this problem."

"Sabbagh says there are currently no treatment guidelines for the management of the long-term effects of neurological COVID-19, which is why this study is so significant."
 
Colorado Boulder: 'Long COVID link to cortisol and hair-trigger stress response explored

Excerpts
:

'The study was funded by the nonprofit PolyBio Research Foundation'

'Proteins left behind by COVID-19 long after initial infection can cause cortisol levels in the brain to plummet, inflame the nervous system and prime its immune cells to hyper-react when another stressor arises, according to new animal research by CU Boulder scientists.’

'To explore just how such antigens impact the brain and nervous system, the research team injected an antigen called S1 (a subunit of the “spike” protein) into the spinal fluid of rats and compared them to a control group.'

'After seven days, levels of the cortisol-like hormone corticosterone plummeted by 31% in the hippocampus of rats exposed to S1. That is the region of the brain associated with memory, decision making and learning. After nine days, levels were down 37%.’

“We show for the first time that exposure to antigens left behind by this virus can actually change the immune response in the brain so that it overreacts to subsequent stressors or infection,” said Frank.’

'He theorizes that the process might go something like this: COVID antigens lower cortisol, which serves to keep inflammatory responses to stressors in check in the brain. Once a stressor arises—whether it be a bad day at work, a mild infection or a hard workout—the brain’s inflammatory response is unleashed without those limits and serious symptoms come screaming back.’

'Rooting out the source of antigens—including tissue reservoirs where bits of virus continue to hide out—might also be an approach worth exploring.'

“There are many individuals out there suffering from this debilitating syndrome. This research gets us closer to understanding what, neurobiologically, is going on and how cortisol may be playing a role,” said Frank.
Quite fascinating. They seem to be going in the same direction as Jared Younger--thinking a cause is neuroinflammation triggered by ordinary events after COVID dysregulates the immune system.
 
AZ Central: "Does long COVID cause a cognitive disorder? A $2.5 million Arizona study aims to find out"

'The study is funded by $2.5 million in federal American Rescue Plan money funded through Arizona Gov. Katie Hobbs' office.'

'This study is necessary to determine whether long COVID-19 is a risk factor for developing its own cognitive disorder, said behavioral neurologist Dr. Marwan Sabbagh, who is co-principal investigator of the study and vice chair of research for Barrow’s Department of Neurology.'

"We're looking specifically for people who have known that they have brain fog and cognitive impairments," he said. "There are some people who have come to me and said they can't go back to work because they just can't remember and think as clearly as they did before."

In his practice as a behavioral neurologist in Barrow's Alzheimer’s and Memory Disorders Program, Sabbagh regularly sees patients who have had COVID-19 and now have a lingering "brain fog" that is impeding their lives.

"They can clearly say they were completely fine, they were doing fine, they got COVID, they got very sick from COVID and they've been having neurological problems ever since then — that would be the group I'm looking for," Sabbagh said.

Emerging research suggests a connection between COVID-19 and cognitive problems, but Sabbagh said it's been piecemeal and he wanted to do a well-structured, well-designed study "that looks at all the biomarkers and all the measures all together in a longitudinal manner."

"In the majority of people it goes away. In a handful of people it doesn't," he said. "And in people it doesn't — why? Why is it not clearing up?"
 
Colorado Public Radio: 'New CU Boulder study explores how low cortisol levels play a part in long COVID'

“We show for the first time that exposure to antigens left behind by this virus can actually change the immune response in the brain so that it overreacts..'

'He said more research is needed and noted humans obviously differ from rats. But this research, combined with more being done around the globe, could help scientists better understand the neurobiology of long COVID, and potentially develop medications and treatments someday.'

“So I really believe that this could be playing a role in the fatigue symptoms that most long COVID patients describe,” he said. “And of course, cortisol also plays a role in learning and memory. And so if this has been altered in some way in the brain, then it could be affecting how you're able to learn or memorize.”

'The study, funded by the PolyBio Research Foundation, was published this week in the journal Brain Behavior and Immunity.

More than 700,000 Coloradans may have been affected by long COVID..'
 
Neuroscience News: 'COVID’s Spike Protein Enhances Ability to Infect Brain'

'The new collaborative study between scientists at Northwestern University & the Univ. of Illinois-Chicago uncovered a series of mutations in the SARS-CoV-2 spike protein..'

'Scientists have discovered a mutation in SARS-CoV-2, the virus that causes COVID-19, that plays a key role in its ability to infect the central nervous system.'

'The findings highlight the need for specific therapies to address these neurological complications.'

'It’s still not known if long COVID is caused by direct infection of cells in the brain or due to some adverse immune response that persists beyond the infection,” Hultquist said.'

“If it is caused by infection of cells in the central nervous system, our study suggests there may be specific treatments that could work better than others in clearing the virus from this compartment.”

'Funding for this study, “Evolution of SARS-CoV-2 in the murine central nervous system drives viral diversification,” was provided by the National Institutes of Health; the Department of Defense; and through institutional support for the Center for Pathogen Genomics and Microbial Evolution and the Northwestern University Clinical & Translational Sciences Institute (NUCATS).'
 
(Features now NIAID Director)

11/19/21, Alabama Political Reporter: “More than half of those with COVID suffer longer-lasting health problems

Dr. Marrazzo: “…neurocognitive impairment..this COVID brain fog that people describe..fatigue..muscle weakness…these data are concerning..”

Marrazzo: “They really say that we are dealing with a real syndrome that these patients are suffering from. They’re suffering from something we don’t really understand.”

“The goal is to study those people for up to four years to gain understanding of long COVID, Marrazzo said. Those studies could begin in December.”
 
WSJ: 'Long Covid Knocked a Million Americans Off Their Career Paths'

Years after infection, even answering email remains arduous for many

"“It’s not going away,” he said. “It’s going to be one of another 100 conditions that we have to grapple with.”

'Walking across the kitchen of her cafe in Biddeford, Maine, in June 2020, Stacy Cooper felt exhausted.'

Among its many symptoms is post-exertional malaise, which can worsen after even minor physical or mental activity.

More than 5% of adults in the U.S. have long Covid, and it is most prevalent among Americans in their prime working years.

“I sometimes feel self-conscious talking to my friends or family, because their life updates are about career milestones or deadlines or completed side projects, and I can’t answer in kind,” Sekar said.
 
SciTech Daily: 'Scientists Crack Lyme Disease’s Genetic Code, Paving the Way for Better Diagnosis and Treatment'

'A groundbreaking genetic analysis of Lyme disease bacteria has paved the way for more accurate diagnostics, treatments, and vaccines.'

“This is a seminal study, a body of work that provides researchers with data and tools going forward to better tailor treatment against all causes of Lyme disease and provides a framework toward similar approaches against other infectious diseases caused by pathogens,” said Benjamin Luft, the Edmund D. Pellegrino Professor of Medicine at the Renaissance School of Medicine at Stony Brook University.

'The NIH-funded project included multiple strains of the bacteria most commonly associated with human infections and species not previously known to cause disease in humans.'
 
AP, 8/23: 'CDC Director Mandy Cohen holds a press briefing'

Peter Marks, FDA: "I have a tremendous empathy having seen people struggle with Long COVID in their 30's & 40's.."

"something that continues to be forgotten..the only way you get Long COVID is by having COVID.."

Cohen: "...even if you've had a mild course of COVID in the past, that does not mean you wouldn't get a long course of COVID going forward in the future.."
 
Ideastream Public Radio: 'As COVID-19 surges in NEO, public health experts discuss new vaccine, long COVID research'

'..one phenomenon continues to remain a mystery: long COVID'

'At Ohio State University, a team of researchers are working to develop effective treatments..'

"They recently received a $15 million federal grant from the NIH to find solutions to long COVID. This Tuesday, we will speak to the project lead about their progress thus far.'"

Excerpts from interview:

Dr. Amal Amer, OSU: "I got COVID three times...after the second time, I suffered from brain fog..it was the most horrifying experience of my life. This was very scary..my job depends on my brain. All of a sudden I couldn't even type...it was really shocking."

"..I'm reading a paper, as soon as I finish a sentence, I couldn't understand what I just read. I didn't know what to do. There is still no treatment...I was among the lucky few that recovered gradually...and gained my ability to think again..but I feel worried about those who are not that lucky and are suffering for extended periods of time - they do not know what's going to happen to them."

"I was contacted by so many patients and many of them lost their jobs - lost their lives - it was heartbreaking."

(on the $15 million NIH grant just awarded to OSU): "so this project is focused on what SARS-CoV-2 the virus can do to your organs so we're not just looking at the brain..we're collaborating with several people..."

"We're trying to find a biomarker. We're trying to understand what the virus is doing in the lungs..in the immune system...what is happening in the brain..and the reason we need to undestand that, so then we can find a drug target..."

"...if you target caspase 11, you may have an amazing drug target..."

"when I was trying to describe the brain fog it's very hard to describe..."

"We hope to kind the key molecules that affect the lungs, the brain, the innate immune system, and the adaptive immune system...once we find how caspase 11 can regulate all that, I'm already working with collaborators on how to do a drug target...how to target this molecule..."
 
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