News from the USA, United States of America

5/23/22, ‘From Talkline with Hoppy Kercheval: Dr. Walter Koroshetz”

Koroshetz: “RECOVER Initiative is out to understand the biology behind the post-acute sequelae of COVID..so we can find treatments that will help people. So people have trouble with sleep. We try and understand what's wrong with the sleep in people who had post-COVID. Some people have trouble with memory and concentration. A lot of people have trouble with fatigue. So trying to understand the underlying biology that's causing this problem in them would be a tier two or tier three set of investigation.

Host: “Doctor, will you all come into this with a hypothesis that you think that long haul COVID is, is that some people get long haul COVID because, or is this you're gathering the data and see where the data lead?”

Koroshetz: “Yeah, so I'd say both of those things are what's happening. Unfortunately, I have to state that this is not, this is not our first rodeo, that there have been many infections in the past, Lyme disease, infectious mononucleosis, where some people go on to 10, 20, something like a lifetime of disability from these post-infectious symptoms. We've never been able to figure out what it is. So we are starting from very low knowledge base. So we do have to keep our eyes open. We can't be biased.

Now, that being said, there are a couple of culprits that we have to kind of nail down whether they're active or not. So we don't know as if there's persistent virus in the body that's continuously irritating the immune system. We don't know if the COVID infection upset somebody's immune system and it never reset back to normal. We don't know whether the COVID, the immune response to COVID kind of overlapped and set up an immune response against the person's own body, so-called autoimmune disorder. So those, I would say, the three big ones out there, but you can't be too biased. You want to rule them in or out quick, but we really don't know the answer to that question.

I can feel that frustration, and that's why we're really pushing on this study to try and get answers. As I mentioned in these other conditions, we think that this has led to people developing what we call myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS. And those people are disabled seemingly forever. And so that's what we're really hoping to understand quickly so that we can stave that off. Because as you can imagine, it's terribly frustrating when you're not getting better from this infection.

Host: “And we'll wanna talk to you months from now when you're finished with the research, and hopefully we'll have some encouraging findings”

 

4/21/21, "iHeartRadio Communities: Neurological Impact of COVID-19 & Childhood Hunger with Dr. Walter Koroshetz"

Koroshetz: “..what was surprising is that people who had COVID that didn't even require hospitalization, still some of them are having persistent symptoms out now, you know, six, seven months after they got infected. And that was something that no one really expected. There are some viruses that, you know, like mononucleosis, which is, you know, kids in college who often lose a semester or a year because they're so tired even after the virus is gone. So COVID is acting more like that at this point that people are having trouble many months later.

So, yeah, we have a major program that we're going to be launching now, have a talk about it, that is trying to get at the bottom of that problem, see if can get some treatments...so it's not one thing, it's multiple things that people are suffering from. The big one is fatigue…you don't have that inability to exercise or study or concentrate, that seems to be the overwhelmingly most common thing. And people complain of trouble with their memory and their ability to attend and to kind of think quickly..."

 

5/31/23, ‘From MetroFocus: The Podcast’: “The Long Covid Health Crisis Night 2”

Dr. Rainu Kaushal, Cornell: “What we think is happening in Long COVID, either they have an ongoing reservoir of virus..the other thing. is an inflammatory response..we know that COVID, like many other conditions, causes an inflammatory response, causes inflammation of the tissues, and we think that part of what happens in certain patients with Long COVID is the consequence of that inflammation.”

"So, Kevin, one of the most frustrating things for the people who I know who have developed long COVID, including our associate producer - who is listening to us now, is the fact that it seems so random…”

Kaushal: “So my sense is we just don't know enough yet about long COVID. What happened with COVID is our scientific community galvanized internationally in unprecedented ways, right? We've never seen a vaccine develop that quickly...we've never seen therapeutics develop this quickly. And with long COVID, it's been a little bit slower, partly because I think there is less security, right? People are not dying. And so there's an urgency, but that urgency is less acute.”

 

7/18/24, "From Conversations on Health Care “HHS’ Admiral Rachel Levine”

RL: “We have actually every month or so a Long COVID Coordinating Committee meeting involving almost every agency administration. We're going to do everything we can to support people impacted by Long COVID and their families in our communities. And we are playing a coordinating role, for example, with the NIH and their RECOVER Project. The RECOVER Project is going apace. It is going as fast as humanly possible.

“We're working with our ACL office in terms of disability, and we work with Social Security Administration in terms of disability, and then with the Labor Office in terms of workers. This work is happening across the administration. It is a priority of the administration. Long COVID is critically important. It's the absolute focus of our work.”

 

*sigh*

 

8/27/24 - NIH, Office of Autoimmune Disease Research (OADR) in Office of Women's Health: 'Going Viral: Exploring Viral Triggers of Autoimmune Disease'

https://twitter.com/user/status/1842269656645550097

 

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.'

 

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.

 

They're involving Walitt in this .

 

I'm not positive but I think he's been involved since the beginning, which obviously sucks (so it's not a surprise but still hard to fathom)

 

They might do well to do a controlled trial to see if improvements after IVIG are actually 'responses'.

 

9/27/24, Mass ME: 'ME/CFS, Long COVID, and Other Infection-Associated Chronic Conditions: What They Teach Us at UMass Chan Medical School on 10/4/24'

 

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.”

 

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.”

 

Weird how refusing to try doesn't produce results.