News from the USA, United States of America

2/7/24, 'Are Monoclonal Antibodies a Possible Treatment for Long COVID? ft Prof Nancy Kilmas'

"..it's an unusual study because it's funded by the State of Florida, which is very odd. They're not usually in the clinical trials business..they partnered with the Schmidt Family Initiative for Long COVID, which is an amazing foundation that's doing really cutting edge and innovative work. So, they basically were matching each other. It's a matched award to allow me to do this study"

"It's our top priority. It's very hard to get things like this done quickly, but the FDA - thirty days, they were just great! I mean, honestly, the FDA did their job and did it really well."



https://twitter.com/user/status/1865792642442997871


https://twitter.com/user/status/1865792748714140156


Thread to discuss this:
News from the Institute of Neuroimmune Medicine (INIM), NOVA, Nancy Klimas
 
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From a Propublica Reporter on Bluesky

Chronically ill/disabled/long covid-havers and #pwME: I want to hear your stories. Have you been denied care or adequate infection control protection while getting care? Are you a worker denied the ability to protect yourself with an N95? What barriers have you faced to equal treatment?

Please get in touch if you've experienced this in the USA. My contact information is in my bio.
Click to expand...
https://bsky.app/profile/phoebepetrovic.bsky.social/post/3lcv4desaas2v

Would be really cool if the experiences of pwME (especially severe) were included in this article.
 
Sharing from MN (a few months late)

July 2024, Long COVID Guiding Council, Convened by the Minnesota Department of Health - Long COVID Program in partnership with Stratis Health: "Update from the Field: Paxlovid for Prevention of Long COVID A Series on Long COVID"

Notable findings: 'Additional studies of the potential effects of antiviral therapy for the prevention or treatment of long COVID and the populations most likely to benefit are urgently needed.'

The work group members included (in alphabetical order by organization):

• Jane Rudd, Essentia Health
• Sandra Turbes, Genevieve
• Charlene McEvoy, Health Partners
• Ravindra Ganesh, Mayo Clinic
• Stephanie Grach, Mayo Clinic
• Tanya Melnik, M Health Fairview
• Farha Ikramuddin, M Health Fairview
• Sarah Lim, Minnesota Department of Health
 
CU Boulder: 'Why does the COVID-19 virus sicken some more than others? Discovery sheds light'

"For years, scientists have looked to a critical piece of immune system machinery—known as the interferon pathway—for answers. There, when our cells sense an infection, they release a protein known as interferon, which warns other cells to fight the virus.

Studies show that when this signaling goes awry and leads the body to under or overreact, people are more likely to develop severe or Long COVID. Glitches in this pathway have also been implicated in autoimmune diseases and cancer.

“We’ve discovered that there is an entire class of under-appreciated protein variants that can have an immense impact on our immune function,” said senior author Ed Chuong, an assistant professor in the Department of Molecular, Cellular and Developmental Biology and the BioFrontiers Institute.

“If we can manipulate this dial to turn the immune system up or down it could have broad therapeutic applications, from infection to autoimmune disorders to cancer.”

The findings suggest that the balance between IFNAR2 variants acts as a “tuning dial” for controlling the strength of immune signaling, and this can vary from person to person. Individuals who express abnormally high levels of the variant might be more susceptible to severe infections, while people expressing low levels may have chronic inflammation, autoimmune issues like psoriasis or irritable bowel syndrome, or Long COVID.

Bigger picture, they believe that the story of IFNAR2 is the tip of the iceberg, and many other immune functions may be regulated by these long-ignored genomic hitchhikers."

Cell study: https://www.cell.com/cell/fulltext/S0092-8674(24)01333-3
 
A pity that University press releases mangle the science so much.
What on earth are 'genomic hitch-hikers'?

They seem to have missed that there are a whole family of interferons, not just variants thereof.

When I was about five years old our closest family friends were the Isaacs family and as we played in the garden the father, Alec, discovered in his lab at MRC Mill Hill (NIMR) an effect he called interferon - which later was found to be due to several molecules. He was made a Fellow of the Royal Society but died fairly soon after from a brain aneurysm and never got his Nobel Prize. For a long time most interest was in gamma interferon, which is probably one of the things that makes us feel ill with infections. Alph and beta interferons then became more popular and seem to have a deeper role in regulating lymphoid tissue microenvironment in all sorts of ways. Alpha interferon has of course been linked to fatigue. That story seems to have fizzled out as a lead to ME/CFS but maybe because people are not looking at it the right way.
 
Dakota15 said:
Sharing from MN (a few months late)

July 2024, Long COVID Guiding Council, Convened by the Minnesota Department of Health - Long COVID Program in partnership with Stratis Health: "Update from the Field: Paxlovid for Prevention of Long COVID A Series on Long COVID"

Notable findings: 'Additional studies of the potential effects of antiviral therapy for the prevention or treatment of long COVID and the populations most likely to benefit are urgently needed.'

The work group members included (in alphabetical order by organization):

• Jane Rudd, Essentia Health
• Sandra Turbes, Genevieve
• Charlene McEvoy, Health Partners
• Ravindra Ganesh, Mayo Clinic
• Stephanie Grach, Mayo Clinic
• Tanya Melnik, M Health Fairview
• Farha Ikramuddin, M Health Fairview
• Sarah Lim, Minnesota Department of Health
Click to expand...

Quickly sharing Grach's recent award with Mayo Clinic, who is a member & leader on the MN LC Guiding Council with MDH and is leading the Rapamycin trial for ME patients at Mayo Clinic

https://twitter.com/user/status/1864874493761462350


Quote: "Incredibly honored to have received the Mayo Model of Care Award tonight. I am so thankful to my friends and colleagues for their support of me and the patients we serve"
 
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STAT News: 'My oral cancer shows the deep connections between chronic and infectious disease'

'The new administration wants ‘a break’ from infectious disease research. That’s impossible'

'Long Covid is a recent example. The virus SARS-CoV-2, which causes Covid-19, leads to short-term inflammation in many people. But 17 million adults in the U.S. continue to experience a range of ongoing, long-term health issues, including extreme fatigue and impaired cognitive function.'
 
NPR: 'A push to understand long COVID'

'The National Institutes of Health announced a $300 million investment to research treatments for long COVID'

'In the US, there are an estimated 17 million adults with Long COVID. Many are unable to work or care for their families'

---

Boden: "Patients tell me they're exhausted. They're frustrated. Doctors feel this way too. Dr. Michael Brode at UT-Austin says there's a lot of guesswork in treating Long COVID because there's not enough research"

Brode: "I'm in this terrible position.."

https://one.npr.org/?sharedMediaId=1221439460:1263933699
 
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Yale Medicine: 'Long COVID Keeps People Out of Work and Hurts the Economy'

'Long COVID isn’t just a health issue—it’s hitting wallets and workplaces hard. Millions of Americans are struggling to return to work months after their initial infection, and the economic toll is staggering as governments and employers scramble to address this growing challenge.'

'With costs this high, virtually any amount spent on Long COVID detection, treatment, and control would result in benefits far above what it costs.'

'The NIH clearly agrees. They recently approved an additional $147 million to the $515 million allocated earlier this year, bringing total new funding to $662 million to further support the Researching COVID to Enhance Recovery (RECOVER) Initiative, a nationwide research program to fully understand, diagnose, and treat Long COVID.'

'Results can’t come soon enough.'
 
As this interview was about a year ago right at this time, thought I'd leave here but mods feel free to evaluate as you see fit (there is several ME mentions as well)

12/15/23, Ohio State Mednet: Post-Acute Sequelae of COVID-19 (with Dr. Andrew Schamess, Dr. Erin McConell & Dr. Aaron Friedberg)

Dr. Schamess: “Brain fog…it's an intimidating symptom…there's something neurological going on that's causing cognitive impairment, and we don't know what it is..”

“The concern with long COVID is that this can affect the autonomic nervous system by various mechanisms, which we will discuss, and thus cause symptoms of dysautonomia. So as I mentioned earlier, we're going to discuss postural orthostatic tachycardia syndrome"

“So there's a couple of theories of why patients with long COVID can have POTS. One of them is autoimmunity, where the COVID virus is thought to attack specific receptors, such as the acetylcholine receptors, the angiotensin II receptors, which are kind of the hot spots for lots of things COVID related. The dysautonomia with long COVID can be related to neuropathy, especially small fiber neuropathy, which can cause some of those symptoms with the venous pulling.”

“Many of our patients with long COVID suffer from post-exertional malaise, which Dr. Schamess alluded to. Dr. Friedberg will talk more about.”

“There are many conjectures as to, you know, fun pathophysiologic mechanisms that might explain this. And I just wanted to explore a few in this discussion. One of them was the question of mitochondrial dysfunction.”

“…the mitochondria, where much of the ATP, the energy for the cell, is made, and so might they not be functioning correctly as a source of this. And there are other potential links. So mitochondria actually also play a role in the cellular innate immune response.”

“Another possibility is that perhaps there's impaired oxygen uptake in chronotropic responses….but based on the Fick principle, as long as there isn't some mechanical problem, if the peak VO2 is reduced, it either has to be because of one or both of decreased cardiac apocardial index or response or impaired systemic extraction. Essentially, you're either not having a sufficient supply from heart and lungs, or you're not having sufficient use of that oxygen supply in the periphery.”

“this peak aerobic capacity was reduced...their body just can't use the oxygen very well.”

“..post-exertional malaise is real and can be very debilitating…”

“…our knowledge of long COVID is quickly evolving and advancing…”

“I tell my patients, kind of the wild west of medicine right now, where we are all learning together..."

"..a group of amazing people who are not only suffering from the disease, but actively involved in researching it and seeking answers to it"

"I think the best thing I can recommend is to listen to your patients and to make sure that they feel heard. Because this is an invisible illness and a new one, often patients will not feel heard by their friends, family members, spouses, their physicians. And so it's so important to find out what you can about this illness and to be there with your patient and be an advocate for them.”
 
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STAT News: 'Long Covid, AI ‘obsession,’ trust: What STAT readers thought went overlooked in 2024'

'And what they’re watching for in 2025'

"I think the long Covid crisis will be big in 2025. How will long COVID be addressed in the new administration, with the expected changes with HHS, NIH, FDA and CDC? There will need to be a new infusion of funding — but will it be caught in political warfare and will the new leadership be able to meet the moment that is needed for millions of Americans struggling? That’s a big worry on millions of minds right now considering the bipartisan divide with so much, especially this disease."

— Billy Hanlon
 
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Dakota15 said:
STAT News: 'Long Covid, AI ‘obsession,’ trust: What STAT readers thought went overlooked in 2024'

'And what they’re watching for in 2025'

I think the long Covid crisis will be big in 2025. How will long COVID be addressed in the new administration, with the expected changes with HHS, NIH, FDA and CDC? There will need to be a new infusion of funding — but will it be caught in political warfare and will the new leadership be able to meet the moment that is needed for millions of Americans struggling? That’s a big worry on millions of minds right now considering the bipartisan divide with so much, especially this disease.

— Billy Hanlon
Click to expand...

Speaking very much as a non American but won’t Long Covid require very much the funding and approach to health care that the new administration will want to defund?
 
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