NYU Langone: 'Telehealth tDCS Shows Promise for Neurologic Symptoms of Long COVID'

“This is the first nationwide, controlled clinical trial to directly address PASC-mediated cognitive dysfunction.” - Leigh E. Charvet, PhD

“Our goal is to provide patients with long COVID an accessible, evidence-based treatment approach that will improve their quality of life.”

'The NIH recently launched a larger study that aims, in part, to clarify the method’s utility. The RECOVER-NEURO trial is testing tDCS alongside other interventions for cognitive dysfunction related to long COVID, including brain fog, memory deficits, and difficulties with attention and problem-solving.'
 
11/3/22, Open Mics with Dr. Stites: Show Me the Science: National Study on Long COVID

“Joining us virtually from Washington, DC is Rear Admiral and Assistant Surgeon General and Deputy Assistant Secretary in the US HHS for Science and Medicine, Dr. Michael Iademarco.”

Host: "“What are some of the similarities between long COVID and other infection associated conditions?”

Iademarco: “When we think about long COVID, it depends on how you categorize it. There could be up to 40 different conditions, and some of them share symptoms with previously recognized infection associated conditions. One of them, for example, is ME/Chronic Fatigue Syndrome."

Another is the Dysautonomia, which I mentioned previously, and Cognitive Impairment, which is often termed Brain Fog in the media or lay press. And so there are examples of conditions that share symptom overlap, to a significant degree, to what we're seeing definitively in patients with long COVID. And then there's other conditions, you know, viruses, there's all different types of viruses and a few bacteria that cause these more chronic conditions.

For example, Lyme disease or West Nile virus, etc. A number of these conditions we know cause a whole host of symptoms. And so when you compare the vast array of perhaps over 200 symptoms that have been categorized so far with long COVID, you can find conditions or sub conditions that share overlap with these other conditions.”

“So if we can understand and study the basic causes of long COVID, it's hoped that we'll actually be able to benefit, not just patients prevent and help patients with long COVID, but the understanding and the therapies could extend to people with these other conditions.”

Host: “The cognitive issues, all these symptoms overlap with other health disorders like chronic fatigue syndrome as you talked about, and myalgic encephalomyelitis. So what can we learn from these other conditions as well?

Iademarco: "Yeah, I think that's another point that we're trying to do from a federal coordination view. So you know how in different areas of medicine, we have sort of separations between different disciplines, cardiology or psychiatry, etc. And so when you think about all those other conditions that we've just been talking about, they have their own experts."

And because long COVID and how long COVID is new, there's a new emerging set of experts. So one thing we try to do is to get these experts together as quickly as possible, whether it's a research study or trying to design best practices. We're working closely with professional societies to also help with some of these bridges.”

“In terms of the causes with long COVID, I think there's two emerging tracks that people are thinking about. One is the virus causes direct effects on tissues and cells throughout the body, causing the damage leading to the symptoms and then the condition. And then the second theory or second bucket of theories is that the virus causes inflammation in a complicated way where that the virus may settle down or be eradicated or eliminated, but the continued persistent inflammation goes on to have bad effects on the body. So two examples might be that in the first category, the virus is affecting, say, blood vessels.

There could be small clots, and this could be contributing to the cognitive impairment. That's just one of several ideas in that area, where in the second category, the virus is causing an immunologic reaction, and then that immunologic reaction hits the pancreas and then causes diabetes. So these are the two major pathways. But I think in the end, we're going to find multiple pathways in terms of cause and effect for long COVID.”

Host: "“Joellen wants to know, could this type of research for COVID and long COVID help with research for other conditions like fibromyalgia? Are there similar characteristics with fatigue?”

Iademarco: "Yeah, in the RECOVER studies, actually, one of the challenges with the RECOVER studies is defining what we call the endpoints. That is, you do the study and you have to measure something at the end to see if there was an effect. Did the patient get better or not? Did the cancer go away or not? With long COVID, because it's new, defining these measurements to determine whether a certain treatment has been successful or not, or effective or not, has really been challenging. And fatigue is one of them.

It's hard to measure fatigue from a objective machine-measured endpoint or testing endpoint. But the NIH and their partners in academic centers, relying on previous literature from other fatigue conditions, including fibromyalgia, have come up with ways that they're going to measure fatigue. So yes, fibromyalgia includes overlap with these long COVID conditions. Fatigue is one of those important symptoms. And measuring it is really important. And people, everybody wants everything to go really, really fast, which is very understandable. But at the same time, we have to get it right so that we end up with meaningful results at the end, so that can lead to approved tests and treatments.”

“Where it's more challenging are the conditions in this third bucket that we talked about in terms of chronic fatigue syndrome, dysautonomia or POTS and the cognitive impairment, along with other autoimmune types of conditions. There things are less well defined.”
 
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11/15/22, PulmPEEPs: “Long COVID Roundtable”

“Jason Maley. Jason is an Assistant Professor of Medicine at Beth Israel Deaconess Medical Center and Harvard Medical School. He is the Director of the BIDMC Critical Illness and COVID-19 Survivorship Program, and the Co-Chair of the American Academy of Physical Medicine and Rehabilitation, Postacute Sequeleae of SARS-CoV-2 Infection. He is NIH funded to study post-COVID patients,”

Maley: “Another example might be the unique aspect of severe persistent fatigue…that's very unusual and a unique aspect that we see with post-viral syndromes like ME/CFS and with long COVID."

“My takeaway is really this experience with working with patients with long COVID has brought me back to the core aspect of medicine, which is a relationship between a clinician and a patient and being thoughtful about how to help that person in the things that matter to them. And listening more than talking.”
 
6/12/21, Coronavirus (COVID-19): “What Do We Know about Long COVID?"

“And now with this infusion of NIH funding, I'm hopeful that at this time next year, we'll have even more updates to report”

“A lot has also been raised by, again, the patient community about how, and Dr. Fauci himself recognizes it, it's extraordinary how many people with COVID-19 have a post-viral syndrome that's very strikingly similar to myalgic encephalomyelitis or chronic fatigue syndrome.”

“we know from the similarity and the overlap between long COVID and chronic fatigue syndrome, that that can actually set people back. This phenomenon of post-exertional malaise where people feel more tired if they over-exert themselves”

“So it's already known that certain viruses definitely have long-term impacts, and that's why it is critical to really study all of this and put it into context of what's known about other viral illnesses.”

“What is the biological basis of long COVID? And again, maybe this is direct viral toxicity and the vaccine is somehow helping with that. Perhaps it is helping with the auto antibody response. Perhaps it's dealing with a persistent viral reservoir.”

“So our take-home points, you know, the care of patients with long COVID or PASC…this is new and evolving. And we really need a comprehensive, multidisciplinary approach to address these long-term physical, pulmonary, cognitive, and mental health symptoms.”

“So now we're seeing NIH funding, this huge funding push towards long COVID, which is great, which a lot of researchers are saying, we needed this funding last year to study patients as they were coming out last year.”

UCSF Pulmonologist Dr. Lekshmi Santhosh: “That is a huge part of my chats with patients, is telling them, I believe you. And listening and validating their experience. I have heard so many horror stories that just bring me to tears of what patients have been through. You know, being dismissed..”

“the medical community is certainly catching up, but I definitely hear and my heart goes out to people who have felt that they weren't being heard, they weren't being listened to, that they were being discriminated against. So I tell people, you're not alone.”
 
9/23/24, ACSH Science Dispatch: “Have We Pinpointed A Cause Of Long COVID?”

Dr. Chuck Dinnerstein, Director of Medicine at the American Council on Science and Health: “There is an NIH long-term study looking at long COVID..trying to figure out where are the most promising places to look for an understanding and a solution to the problem.”

“I'm sure there will be more on this, because long COVID doesn't seem to go away. Not in terms of just the condition itself, but everyone's always talking about it to some degree.”
 
It's hard to measure fatigue from a objective machine-measured endpoint or testing endpoint. But the NIH and their partners in academic centers, relying on previous literature from other fatigue conditions, including fibromyalgia, have come up with ways that they're going to measure fatigue.
Maley: “Another example might be the unique aspect of severe persistent fatigue…that's very unusual and a unique aspect that we see with post-viral syndromes like ME/CFS and with long COVID."
They are still stuck in their monomaniacal obsession with 'fatigue'.
 
Message that came through today:

"Greetings,

Researching COVID to Enhance Recovery - Treating Long COVID (RECOVER-TLC) is excited to announce a virtual webinar that will be co-hosted by the National Institute of Allergy and Infectious Diseases (NIAID) and the Foundation for the National Institutes of Health (FNIH) next week on Thursday, November 21, from 2:00-3:00 PM EST. This live webinar also will be recorded and posted online so it can be viewed at later dates.

Dr. Jeanne Marrazzo, Director NIAID, and Dr. Julie Gerberding, Chief Executive Officer of the FNIH, will begin the webinar with brief introductions. Dr. Joseph Breen (NIAID) will present an update on the status of RECOVER-TLC overall and Dr. Lizzie Geerling (FNIH) will provide a summary of proposed therapeutic agents submitted to the RECOVER-TLC portal to date.

The remaining portion of the webinar will be dedicated to answering questions or comments about RECOVER-TLC. To maximize the number of questions that can be addressed during the webinar, we are accepting questions and comments ahead of time. Any questions you would like to submit can be emailed to recover-tlc-submissions@nih.gov. Audience members also will be able to pose questions to presenters live during the webinar.

A registration link with Zoom information will follow this announcement in the coming days. We look forward to this opportunity of providing updates on RECOVER-TLC and addressing questions from the community!"
 
10/11/24, NIH Record: 'Experts Convene at NIH to Discuss Long Covid'

'The three-day workshop took place in the John Edward Porter Neuroscience Research Center on NIH’s campus in September'

'..180 in-person and more than 1,200 virtual participants..'

'NIAID will lead the new program, leveraging its expertise in infectious and immunologic diseases and conditions and its experience in conducting Covid-19 clinical trials. This program will provide a clear path for ongoing scientific and community engagement to assess new ideas, identify potential therapeutics and biologics, and execute innovative study designs.'
 
I would be curious to know your reaction to the meeting, @Dakota15 and others. I came away feeling more frustration than hope. We are almost 5 years into long COVID and we are *just now* having conversations about the kinds of drugs that people want to see studied? Not to mention, I get the sense that everything is operating in series rather than in parallel, like it feels like they won't even start thinking about study design until they decide what drugs to pursue...I can't help but think that a lot could be prepared for early on even if the exact details are not known to make things run much more smoothly.

I wasn't sure if I should be discouraged or encouraged by seeing that over 70% of submissions of drug targets came from patients. I am glad patients are able to provide input. But, do researchers or people from drug companies have no ideas? The fact that LDN was the top submission when we don't have convincing evidence that it helps was just so discouraging.

And lastly, I just feel so tired of the refrain about all the hard, tireless work that is being done by NIH on our behalf. Please let the results do the talking.
 
@wingate I think those are all fair concerns.

There's definitely a bit of an underwhelming feeling in the sense that this is happening now, 5 years later. It doesn't make sense to me either.

I don't know if Julie Gerberding's testimony is lip service or reassuring yet, time will tell (in that they are saying regardless of changes, they will continue moving forward). I agree about letting results do the talking.
 
FNIH: 'RECOVER-TLC Webinar - November 2024'

'On November 21, 2024, NIAID and FNIH launched the first in a series of online webinars highlighting recent progress in the RECOVER-TLC program. Drs. Jeanne Marrazzo and Julie Gerberding welcomed the participants, who included more than 800 patients, advocates, care providers, and scientists from academia and life sciences companies. Dr. Joe Breen summarized our activities since the RECOVER-TLC Workshop convened in late September, and Dr. Elizabeth Geerling provided an overview of the over 300 agents that have been submitted to the intervention portal thus far.'

 
Note this: "RECOVER's deadline to submit long COVID research proposals is Feb. 1."

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.
 
11/26/24, NIAID: 'First Webinar of Long COVID Treatment Initiative Highlights Early Progress'

'We expect to host the next RECOVER-TLC webinar in early January 2025'

'In December, NIAID, along with the National Heart, Lung and Blood Institute (NHLBI) and the National Institute of Neurological Disorders and Stroke (NINDS), will announce 20 new awards to fund RECOVER pathobiology projects. '

'Additionally, next month, NIAID and FNIH will begin distributing an online monthly newsletter sharing the latest RECOVER-TLC activities'
 
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