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Using the latest tools in genetic sequencing, researchers at Mayo Clinic reconstructed how a collective of viral genomes colonized a human brain. The virus acquired distinct mutations that drove the spread of the virus from the frontal cortex outward throughout the brain.
"Our study provides compelling data that shows how viral RNA mutated and spread throughout a human organ — the brain, in this case," says virologist Roberto Cattaneo, Ph.D., who is a co-lead author on the new study, published in PLOS Pathogens. "Our discoveries will help studying and understanding how other viruses persist and adapt to the human brain, causing disease. This knowledge may facilitate the generation of effective antiviral drugs."

Dr. Cattaneo and his team had this unique research opportunity through a collaboration with the Centers for Disease Control and Prevention (CDC). They studied the brain of a person who had contracted measles as a child and had succumbed to a rare, lethal brain disease called subacute sclerosing panencephalitis (SSPE) years later as an adult. They investigated 15 specimens from different regions of the brain and conducted genetic sequencing on each region to piece together the puzzle of how the measles virus mutated and spread
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Yale Medicine: 'Listening to Patients: Improving Care for Long COVID and Other Conditions'

“Chronic post-viral syndromes are common for a host of other viral conditions,” she says, “and we haven’t been paying enough attention to any of them," says Dr. Spatz

'Post-viral syndromes, including Long COVID, likely have a variety of physical causes. More multi-disciplinary research—involving scientists, therapists, and diagnosticians alike—is needed for these types of chronic conditions, the researchers say.'

'..patient-centric approach could benefit not only those with Long COVID, but also many people who already live with other poorly understood chronic syndromes.'
 
10/21/24: 'CDC Provides Supplemental Award to CMSS to Improve Provider Education and Engagement to Care for People with Long COVID'

'In partnership with the Department of Health and Human Services’ Office of Long COVID Research and Practice (OLC), the Centers for Disease Control and Prevention (CDC) recently awarded supplemental funding via a cooperative agreement to the Council of Medical Specialty Societies (CMSS). The funding will support CMSS to provide multidisciplinary coordination and collaboration across medical societies to improve provider education and engagement in the care of patients with Long COVID.'

“CMSS is pleased to support this timely and important work on Long COVID,” said Helen Burstin...
 
9/10/24, SELF: 'Here’s Where Kamala Harris Stands on 6 Essential Health Issues'

'Also worth noting: The Biden-Harris administration has launched a response to long COVID, specifically funneling resources toward research, as well as expanding care for folks with the condition and education for medical providers. That said, advocates have since pointed to a lack of social recognition for the condition and a drop-off in funding for it in Biden’s budget request for the National Institutes of Health in 2025—and it’s not clear if Harris plans to address either concern.'
 
1. 12/27/23, Conversations on Health Care: "Long COVID: 2023’s Enduring Medical Mystery"

“..individuals with long COVID, if they try to push themselves too hard and just grit their teeth..their bodies just crash..their symptoms get worse...”

2. 9/27/23, Conversations on Health Care: 'NYT’s Diagnosis Columnist Dr. Lisa Sanders’ (Yale) Views on Long COVID Affirmed by New Research'

LS: “Fatigue, brain fog….probably the two most common problems I see…people get dizzy when they stand up…tachycardia”

3. 7/18/23, Conversations on Health Care: 'Latest on Long COVID: NIH Study Leader Leora Horwitz'

LH: “The amount of information & data…that we've collected..spectacularly fast. I cannot think of another study that has happened that fast & with that speed”

“One of the most amazing things I think about this pandemic is the degree to which patients themselves have self-organized and have provided that kind of knowledge and support that honestly was really missing in the medical community. Much of what we knew early on and still to this day, what we know comes from patient groups and patient advocacy organizations.”
 
PolyBio supports & helps conceptualize long Covid rapamycin clinical trial

The trial will test a low dose of the drug rapamycin in participants across a 3-month period. Analysis of participant blood samples will determine if rapamycin improves components of the immune response that can control infection.

Medford MA, October 30, 2024 – PolyBio Research Foundation is excited to announce an $800,000 donation to the Icahn School of Medicine at Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio’s Dr. Amy Proal.

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11/1/24: "Cellist Joshua Roman and Long Covid -- Public Health Grand Rounds" with Dr. Atul Gawande, Assistant Administrator for Global Health at USAID (United States Agency for International Development) "where he oversees a bureau that manages over $4 billion with a footprint of more than 900 staff committed to advancing the equitable delivery of Public Health'

Atul Gawande: "..they try to exert physical activity, even mental activity, and that exertion seems to drain out their abilities to function and they crash..'

JR: "I am of course interested in advocacy for Long COVID and I'll just say that I see this as a gateway to a sea-change in how we treat ourselves in the medical system generally because there are so many people impacted that we can't ignore it, first of all - and second of all, so much of it is the kind of unseen disease and condition that tends to get ignored that ME/CFS has struggled with - fibromyalgia have struggled with for decades..."
 
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STAT News: 'What would Hippocrates think of these First Opinions?'

(On recent LC piece)

"Thank you for publishing this, and please consider publishing more articles like this that call out the medical community for turning their shoulder to these patients. There is enough literature out there to support treatment to improve quality of life even if we don’t have a “cure.” Neglecting to take the time to treat what symptoms we do understand in order to ease someone’s complaints feels like one is indeed breaking the Hippocratic Oath, and other health care professionals who need their medical counterparts to hold themselves to this standard are getting fed up with not having that support."

— Francesca DeSimone-Farrow
 
3/9/23, Conversations on Health Care: “Long COVID: Skeptics Are Wrong, Researchers Say”

"It's crucial to understand that there are people with Long COVID who are bedridden right now, who are not able to leave their homes…"

Iwasaki: "What we're seeing, there are several key features that distinguished people with Long COVID such as elevated levels of exhausted T cells. These exhausted T cells are only found in people who are fighting chronic infections or cancer T cells that keep seeing the same antigen over and over, that's where we see these types of cells." We also see that there's evidence for elevated Epstein-Barr Virus reactivation in people with Long COVID. Another feature that's very uniformly different between Long COVID and control groups is the lower levels of Cortisol, Plasma Cortisol, we're seeing in Long COVID patients and because Cortisol is such an important hormone that regulates so many different aspects of our physiology, we can basically assign a lot of the symptoms that they're getting with this low levels of Cortisol."

Margaret Flinter: "We hate to think you have to get out and do fundraising for something that is so desperately needed. I did note a few moments ago, you referenced Epstein-Barr Virus, and we have been reading about how Long COVID research might help us understand how better to treat multiple sclerosis or chronic fatigue syndrome, and we're very intrigued with that"

Iwasaki: "COVID is just one of the many pathogens that can cause this mysterious post acute syndromes. Long COVID is the latest to join that list, but there are a handful of viruses and bacteria and parasites that can similarly they cause long term symptoms and many of these people develop these ME/CFS syndrome. We're hoping that by studying Long COVID and then we'll be recruiting people with ME/CFS into future studies with Dr. David Putrino’s group to be able to understand the parallel between these diseases, and whether one research can inform the other because the underlying pathogenesis may be shared, but that's something that we have to do more research on."

Lowenstein: "..a hallmark symptom of Long COVID tends to be something we call post-exertional symptom exacerbation the worsening of symptoms following a period of physical, mental or emotional exertion."

"Unfortunately, it's not something that's just going to go away, right. We'd like to compare COVID and the flu. ME/CFS may be related to Long COVID. There are a lot of people who have been disabled by the flu as well, right. There are other post viral illnesses. Long COVID is not the first of its kind. There are ways we can mitigate these sorts of problems in the future, and there are ways we can mitigate in the present, and I think talking about it openly is the first step to getting there."

"ME/CFS which is the abbreviated term for Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome. It's another often infection associated complex chronic illness that shares many similarities with Long COVID. In fact, a large percentage of people living with Long COVID have qualified for the diagnosis ME/CFS."
 
3/9/23, On Health: “On What We All Need to Know About Living with Long COVID”

“..so many of these conditions where people are living at the edge of medical knowledge, and certainly COVID is like the shining example of that..”

“And one of the hallmark symptoms of long COVID, which is also a common symptom for ME/CFS, is something called post-exertional malaise or post-exertional symptom exacerbation.”

“And also the NIH's Long COVID research is not in any way building enough on ME/CFS research. They are not pulling in enough experts on ME/CFS. And a lot of advocates feel like they're kind of reinventing the wheel and that's just gonna slow all of this down a huge amount. They're considering looking into exercise on cognitive behavioral therapy as cures for long COVID. And the ME/CFS community is like, no, we already tried that, it didn't work, don't do it again.”

“And for anyone listening with long COVID or ME/CFS, please know that there are so many people working on this problem right now. And I really do believe that things are gonna get better with time, even though I'm also very angry and frustrated.”
 
5/22/23: AMA Update: Long COVID: New research, common symptoms, long-term effects and treatments with Akiko Iwasaki

“we're finding four salient features..first is that people with long COVID had reduced circulating levels of cortisol…”

“The second is that we detected recent reactivation of Epstein-Barr virus in people who have long COVID compared to those who recover. EBV may or may not be directly responsible for the symptoms, but this is a feature we're detecting.

Third, we found that the immune cells are differentially activated. We see more activated B cells and T cells, and T cells in particular, that's to create type 2 cytokines that are elevated in the people with long COVID. And finally, we find that antibody levels to the
SARS-CoV-2 viral antigens are elevated in people with long COVID. This may indicate a persistent antigen for which these people are developing more and more antibodies against.”

“There needs to be more financial assistance to support these people with Long COVID. We also need social support. People with Long COVID often feel isolated and are suffering alone. There's a need for more support programs, social support programs and resources for people with Long COVID. And finally, I would say that we also need more public awareness. Many people are still not aware of Long COVID. And there is a need for education for physicians as well as patients, so that they can get the best treatment and best therapy possible & to support them"
 
4/29/21, AMA Update: “Long-haul COVID research with Dr. Mitch Miglis of Stanford”

“..fatigue is very prominent. The cognitive impairment is extremely disabling for most patients. We don't understand why that is..”

“It's probably not just related to blood flow to the brain. It's probably something else systemic, whether that's inflammation or not, we don't know.”

“So, this is why we need the studies and thankfully the NIH has allocated funding and hopefully that'll be what we're doing in the next year.”

“..think to carry that forward and to build that, ultimately we need funding. And I think this first step that the NIH has taken with trying to create some patient hubs and patient registries I think will encourage that. And not only can we care for patients in a multidisciplinary way, but we can collect this data in a harmonized way and try to kind of determine what works and what doesn't for trials and such going forward.”

“Do you feel like you have the funding, at least initially, for what needs to happen kind of on an ongoing basis?"

"We don't have the funding to carry this at the moment longitudinally. I mean, we just have a funding for a cross-sectional study of maybe 20 patients. But hopefully this next phase of funding that's at least being stimulated by the NIH will give us more opportunities. And looking at various other funding sources, we hope to kind of expand this and of course collaborate with other centers that are interested, very interested in anyone that wants to collaborate with us on this.”
 
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