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9/6/24, The NIH Catalyst, by Michael Tabasko: 'The Autoantibody Hunters'

'From PANDAS to Long COVID, Defining and Treating Infection-associated Conditions That Aren't So Black and White'

Excerpts:

'Nath and Walitt now hope to launch a clinical trial to identify patients with long COVID and T-cell exhaustion and treat them with a PD-1 inhibitor, a checkpoint inhibitor drug sometimes used to treat cancer. According to Walitt, they hope to find out whether the treatment might help restore immune function and clear the viral material, perhaps having downstream effects on the central nervous system and other symptoms.'

“It's the intervention most open to scientifically testing the clinical impact of the observed immune exhaustion that we have right now,” he said.'

'Another trial underway is treating long COVID patients with IVIG, a nonspecific immunotherapy that delivers a concentrate of antibodies. “Some people have a dramatic response, and some people don’t,” said Walitt. “The idea is to understand who the responders are and who are not so that we can predict response and know who to give it to.”

'According to Nath, the present time is a golden opportunity to study these diseases. “We’ve made certain breakthroughs, but there is a lot that remains unknown about a whole host of diseases that look very similar phenotypically but have different names,” he said. “If you find a treatment for one of them, then you might just find a treatment for all of them. There’s room for specialists to really study them, apply their expertise, and make a real difference.”'

'Long COVID has been dominating the news. One theory on how long COVID perpetuates is that bits and pieces of the COVID virus—shards of RNA and proteins—remain in the body and continue to fuel a slow-burning immune response, contributing to inflammation and resulting in symptoms such as cognitive difficulties and fatigue.'

'To answer these questions, Walitt and Avindra Nath, NINDS clinical director and senior investigator at the Section of Infections of the Nervous System, are launching a new study to analyze biopsies from tissue all over the body in living individuals. They intend to compare healthy participants after recovering from COVID with individuals with long COVID and look for remnants of SARS-CoV-2 RNA or proteins.

'Data from the long COVID protocol have shown a dysregulation of antibody-producing B cells and infection-fighting T cells in some participants, and the investigators hope to determine whether some of that immune dysregulation might be due to the inability of some people to clear viral material.'
 
NelliePledge said:
No nobody whatsoever even imagined that viruses cause ongoing illness - completely new phenomenon :whistle:
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Certainly not someone studying this very thing.

Of course he's only saying this because this is the line that medicine uses to cover for their denial, but that's still disappointing. We need leaders. We have bureaucrats instead.
 
Dakota15 said:
9/6/24, The NIH Catalyst, by Michael Tabasko: 'The Autoantibody Hunters'

'From PANDAS to Long COVID, Defining and Treating Infection-associated Conditions That Aren't So Black and White'

Excerpts:

'Nath and Walitt now hope to launch a clinical trial to identify patients with long COVID and T-cell exhaustion and treat them with a PD-1 inhibitor, a checkpoint inhibitor drug sometimes used to treat cancer. According to Walitt, they hope to find out whether the treatment might help restore immune function and clear the viral material, perhaps having downstream effects on the central nervous system and other symptoms.'

“It's the intervention most open to scientifically testing the clinical impact of the observed immune exhaustion that we have right now,” he said.'

'Another trial underway is treating long COVID patients with IVIG, a nonspecific immunotherapy that delivers a concentrate of antibodies. “Some people have a dramatic response, and some people don’t,” said Walitt. “The idea is to understand who the responders are and who are not so that we can predict response and know who to give it to.”

'According to Nath, the present time is a golden opportunity to study these diseases. “We’ve made certain breakthroughs, but there is a lot that remains unknown about a whole host of diseases that look very similar phenotypically but have different names,” he said. “If you find a treatment for one of them, then you might just find a treatment for all of them. There’s room for specialists to really study them, apply their expertise, and make a real difference.”'

'Long COVID has been dominating the news. One theory on how long COVID perpetuates is that bits and pieces of the COVID virus—shards of RNA and proteins—remain in the body and continue to fuel a slow-burning immune response, contributing to inflammation and resulting in symptoms such as cognitive difficulties and fatigue.'

'To answer these questions, Walitt and Avindra Nath, NINDS clinical director and senior investigator at the Section of Infections of the Nervous System, are launching a new study to analyze biopsies from tissue all over the body in living individuals. They intend to compare healthy participants after recovering from COVID with individuals with long COVID and look for remnants of SARS-CoV-2 RNA or proteins.

'Data from the long COVID protocol have shown a dysregulation of antibody-producing B cells and infection-fighting T cells in some participants, and the investigators hope to determine whether some of that immune dysregulation might be due to the inability of some people to clear viral material.'
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They're involving Walitt in this :banghead::banghead::banghead:.
 
3/6/23, The Documentary Podcast (BBC News): “The long haul of long Covid”

Koroshetz: “Brain fog and fatigue, they're definitely related. What it tends to boil down to is a problem with processing speed…it does indicate that there maybe either a problem in the brain or probably more likely something circulating in the bloodstream that is affecting brain function.”

“Do we know yet how long people can expect these sorts of cognitive issues to persist for when they have long Covid?

Koroshetz. “Well, I think that's the million dollar question for people.”

Michelle Monje, professor of neurology at Stanford: “I'm very hopeful that what we learn about brain fog syndromes, either after cancer therapy or after Covid or other inflammatory challenges, will inform each other.”

“Long Covid patient groups and social media have played an essential role in bringing together people with so many different symptoms. The presence of fatigue is thought to resemble diseases such as myalgic encephalomyelitis or chronic fatigue syndrome, sometimes known as ME/CFS.The connection is something that the US RECOVER long Covid trial is keeping in mind about the task ahead.”

Koroshetz: “RECOVER was put together with the idea that the answer is not going to be easy. We thought that if there's going to be a quick solution, it will come up around the world, people will stumble into it. But we knew from ME/CFS that if this is what we think it is, this post-viral condition, this is going to be hard to get an answer to. And so RECOVER was put together to leave no stone unturned so that five years from now we don't have an answer, it’s not because there were things we didn't try, we just weren't smart enough.”
 
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3/30/21: “Translate Your Training: Science Policy: Impacting Society Through Research Funding”

Jackie Ward, Chief of Staff, NINDS: “..one of the things that I am working a lot on right now is this program on post-acute sequelae of SARS-CoV-2 infection..what we're learning is that there are long-term effects of coronavirus infection, that affects the brain, but also the lungs, the heart..as time goes on, we're learning more and more about this disease. So it sort of spans the entirety of NIH.”

“It's not just within one institute within NIH. And so there's sort of a large group of people across NIH who are rapidly developing funding opportunities for this and translating nearly, it's, I think, $1.15 billion that congress said, NIH, you need to spend this amount of money to understand this part of, you know, COVID more. And so, and you have four years to do it, and here's the money, and, you know, do what you can.”

“So we're putting out funding opportunities so that investigators at universities can apply for it. And because this is a very new field, you know, we have experts in neurovirology, but we don't have experts necessarily in, you know, coronavirus infection in the brain. So because it's a very new area, I'm sort of there at the ready with access to our director, and it's sort of a high-profile thing.”

“So I am working with this trans NIH group in great detail to help write funding opportunities, get the word out to investigators who might be interested in applying for these funds and answering these research questions, trying to, you know, do outreach, like writing blogs that are, you know, like being reviewed through many different layers of people, things like that. So it's in part communications, too.”

Host: “It's especially exciting how they're responding to the moment and funding studies of COVID-19 across institutes.”
 
But we knew from ME/CFS that if this is what we think it is, this post-viral condition, this is going to be hard to get an answer to.

Only if you don't do robust honest science on it. Which is what has happened for the last 50 years.
 
Sean said:
But we knew from ME/CFS that if this is what we think it is, this post-viral condition, this is going to be hard to get an answer to.

Only if you don't do robust honest science on it. Which is what has happened for the last 50 years.
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I think that is a bit harsh. Even with robust honest science it is hard. There are heaps of adequate negative studies in ME/CFS. The problem has been in finding a positive lead. If anyone knows where to look I would certainly like to know.
 
Science Magazine Podcast, 4/11/24: 'Trialing treatments for Long Covid...' (Transcript here)

In this segment: Michael Peluso, Sara Cherry, Shelley Hayden

'Reporter Jennifer Couzin-Frankel takes a look at the different trials on the table to treat Long COVID'

'Sara Cherry, a virologist at the University of Pennsylvania has been studying how the virus interacts with different tissues in the body since the beginning of the pandemic. Now, she's looking for biomarkers, molecules, or other substances in the body that largely show up in people with Long COVID. If virus or antigens, viral fragments can be detected, they could help clinicians better track how well treatments work.'

'What we've also been trying to do is look in stool samples from Long COVID patients to see if we can continue to detect viral antigen, and if so, that will give us lots of information. Potentially, we can use that as a biomarker for treatments, watching to see if that goes away. There are other strategies being looked at to try to find remnants of the virus in various accessible tissues. Maybe then, we can be more careful or more thoughtful about which clinical trials we enroll, which patients in to potentially have a better efficacy.

MP: 'I had actually wanted to do a study of a monoclonal antibody for Long COVID basically from the moment that we identified that at least some people had these viral remnants. And a subset of people, we think that these remnants are intermittently present in blood, and if that's the case, they could almost act sort of like as a toxin. Setting off an immune response.'

JC: 'I think the hope is that we will see results from some of these small trials. By the end of this year, it's gonna be important to be thoughtful about how we interpret the results'

SH: In the meanwhile, people need support, and that looks like financial support, that looks like caregiving support, that looks like better training for Long COVID doctors. There needs to be some kind of immediate action to get some education in place so that people have better access to care until we do have treatments. There's not a day that goes by that I don't think about what this is like for the people who don't have family to support them or help them if they aren't able to support themselves anymore.'

SC: While patients like Shelly wait for answers, researchers also hope that what we learn from these trials can be used to better understand other chronic conditions that people develop after viral infections.

Megan Cantwell: 'So if we understand the mechanisms that drive Long COVID, we may then really be able to understand these other syndromes that we really knew very little about..'
 
New York Times: Anthony Fauci: 'A Mosquito in My Backyard Made Me the Sickest I’ve Ever Been'

'I began to experience unexplained, severe fatigue & exhaustion..there is no treatment for West Nile virus disease..I was left to deal with its toll on my body..'

'A very scary part of the ordeal was the effect on my cognition. I was disoriented, unable to remember certain words, asking questions of my family that I should have known the answers to. I was afraid that I would never recover and return to normal.'

'...it has been a harrowing experience.'

'I tell my story because West Nile virus is a disease that, for many people, can have devastating and permanent consequences. At my age of 83, I was at risk of permanent neurological impairment...'

'There are many people who have not been as lucky as I have been in my recovery. Considerably more resources must be put into addressing this threat now, not when the threat becomes an even greater crisis. As a society, we cannot accept this as the status quo.'
 
Saturday, October 12: ‘The Long COVID RISE Symposium’

‘Join us 10/12/24 for the Long COVID Recovery, Insights, Support, and Education (RISE) Symposium @ UW Seattle.’

“Join us for The Long COVID RISE Symposium where speakers and panels will present information for both patient and clinician audiences. In-person and virtual attendance options available.”

“The UW Medicine Long COVID Clinic and RISE Symposium are funded in part by the Agency for Healthcare Research and Quality (AHRQ) as part of the AHRQ Long COVID Care Network.“


Link to agenda: https://t.co/RVzDyc225G

(a session with Dr. Beth Unger on ME and Post-Infectious Syndromes is listed)
 
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