News from the USA, United States of America

(California, USA)
"Santa Clara County holds special hearing on long COVID and chronic fatigue syndrome: Local health experts discuss causes, symptoms and best practices for treating debilitating illnesses"

https://www.paloaltoonline.com/heal...g-on-long-covid-and-chronic-fatigue-syndrome/

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"Panelists and commenters also described the irreversible harm that could occur when health practitioners push ME/CFS patients to exert themselves.

For Enander, a six-minute walk test, that she quit after five minutes, put her flat on her back for two months, she said, noting that more training needs to be provided for physical therapists working with ME/CFS patients."

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Disappointing section:

"At Santa Clara Valley Healthcare, doctors also use a variety of strategies to help patients manage ME/CFS, Narasimhan said. This includes “pacing,” which is the gradual increase of physical and mental activity to avoid post-exertional malaise. Other treatment strategies include pain and sleep management, cognitive behavioral therapy, nutritional support and techniques to improve blood circulation."

https://twitter.com/user/status/1831356867131392114
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6/20/24, Salk Institute (San Diego, CA): 'Salk Institute launches Neuroimmunology Initiative with $20 million gift from NOMIS Foundation'

“We are excited to take a deep dive into the understudied intersection of neuroscience and immunology"

'The Neuroimmunology Initiative will encompass two interconnected research programs: 1) Body to Brain, which will explore how the immune system and inflammation affect the nervous system; and 2) Brain to Body, which will investigate how the nervous system modulates immune responses throughout the body.'

'The Neuroimmunology Initiative will be co-led by Professor Susan Kaech, an immunologist, director of Salk’s NOMIS Center, and NOMIS Chair, and Associate Professor Nicola Allen, a neuroscientist. They will work with Professor Axel Nimmerjahn and Associate Professor Diana Hargreaves to guide the Neuroimmunology Initiative’s research aims. The team will also recruit a new cross-disciplinary faculty member and offer pilot grants to allow a broader range of Salk scientists to explore intersections between their current work and the Initiative’s aims and to infuse their research programs with additional expertise and cutting-edge technologies.'

'As part of this new Initiative, a Neuroimmunology Symposium will be held within the next year, where Salk and other leaders in the Neuroimmunology field will be able to share ideas, seek feedback, and build new collaborations in this space.'

“As a new frontier of biological sciences is emerging at the intersection of immunology and neuroscience, we welcome that Sue Kaech and her colleagues at the NOMIS Center at Salk aim to capitalize on this momentum by launching this Neuroimmunology Initiative,” says Markus Reinhard, managing director of the NOMIS Foundation

“This funding will allow us to tackle currently unaddressed scientific questions, opening fundamentally new areas of scientific inquiry across human health and disease, and paving the way toward innovative therapeutic interventions for a wide range of disorders that have both a neurological and immunological component, such as Alzheimer’s disease, ALS, long COVID, and some forms of cancer.”
 
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(5 minute audio interview)

AZPM: 'Investigating the mystery of Long COVID'

'University of Arizona immunologist Janko Nikolich is contributing to an ongoing national study on Long COVID. He discusses why Long COVID continues to mystify researchers...'

Nikolich: "This is a very serious condition..it is pervasive..it can be extremely disabling. For some people, it's life-altering, life-changing..fatigue being one of the most consistent problems that people complain, not being able to work is directly linked to that.."

Nikolich: "There is a condition called ME/CFS...if you have Long COVID, your chances of having ME/CFS is very significantly higher..."

"..there is likely some virus persistence in direct damage, there is likely some immune dysfunction that predisposes somebody to have an overly aggressive immune response that is then damaging the tissues and then finally there are some problems with blood clotting. I think these three mechanisms, individually, or when combined together, probably give you most of this myriad symptoms of Long COVID.."
 
Dakota15 said:
"..there is likely some virus persistence in direct damage, there is likely some immune dysfunction that predisposes somebody to have an overly aggressive immune response that is then damaging the tissues and then finally there are some problems with blood clotting. I think these three mechanisms, individually, or when combined together, probably give you most of this myriad symptoms of Long COVID.."
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Why do so many researchers/clinicians feel obliged to overstate what we currently know? Why can’t they just say we don’t know the aetiology, but feel that x, y and z are currently seen as the most likely culprits, either individually or in combination?
 
Siouxland Proud (KCAU-TV; Sioux City, Iowa): 'Sioux City resident shares his battle with long COVID'

“The post-exertional malaise. it’s a complete absence of strength and energy...cognitive difficulties sometimes. I have a hard time coming up with words and putting them into sentences.”

“I was painting houses, I can’t climb a ladder with the post-exertional malaise,” he said. “I couldn’t do, you know, pushing a brush on a pole or anything. As far as my standup goes, as long as I’m sitting down, I can get through my set, you know, as well as I can..."

“It’s more than just tired,” Lewis said. “And it’s not all in our heads. And we’d rather be feeling good. We’d rather be healthy. We’d rather be doing the jobs that we like to do, and out enjoying the activities that we enjoyed before.”
 
4/10/23, Fred Hutchinson Cancer Center (Seattle, WA): 'Going long: Viruses linger with lasting impact'

'Herpes, HIV, Epstein-Barr and other viruses hang around, causing potential long-term health woes. Should long COVID surprise us?'

“We’re beginning to realize increasingly the long-term impacts of viruses, the infections that they cause and the damage that our immune system can wreak on us as a result of those infections” - Jim Boonyaratanakornkit, MD, PhD, a physician and infectious disease researcher at Fred Hutchinson Cancer Center in Seattle.

"Some believe EBV or other viruses may be responsible for myalgic encephalomyelitis or chronic fatigue syndrome, often referred to as ME/CFS..."

"Dr. Steve Pergam, medical director of infection prevention at Fred Hutch, called the long-term consequences of infections "a really intriguing space" for new research."

“There’s most definitely a lot to be learned about viruses still,” Boonyaratanakornkit said. “The hottest areas of research are EBV and long COVID.”

"NIH scientists are currently examining the similarities between long COVID and other post-viral fatigue ailments such as long-neglected ME/CFS."

“It’s not clear whether people with long COVID still have virus hiding in their body or if the virus is long gone but it’s tipped off an inflammatory cascade that doesn’t end when the virus goes away. Science is divided on this,” Bender Ignacio said. “We can’t rule out that there’s some persistent amount of virus in some people, but the vast majority who have long COVID, there isn’t virus. COVID-19 flipped the switch and left the building.”

"..Bender Ignacio calls “immune exhaustion.” "Exhausted cells, they’re not good at killing viruses,” she said. “They’re pooped out; their T cells have immune exhaustion."

"Pergam points to a flurry of interest in viral research and the body’s immune system as a silver lining. “Long COVID has provided us with a really robust opportunity to better understand this space,” he said.

'The National Institutes of Health’s RECOVER Initiative (Researching COVID to Enhance Recovery) has a number of long COVID studies running; Fred Hutch’s CCRC is also researching long COVID therapies.'
 
Dakota15 said:
https://twitter.com/user/status/1832505497729319295
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This is somewhat heartening but I wish institutions/companies would just fund ME drug studies, instead of saying 'oh maybe that at some point'.

Long covid is more believed but it's not like it has a biomarker that ME doesn't.

The logical thing is probably to push for non covid ME/CFS arms in long covid drug studies. This could be a good way to ensure we're not left behind or waiting years for something LC patients can already access.
 
STAT News: 'Medicine struggles to define chronic Lyme. Long Covid has only made it harder'

'The two illnesses — one seeping in over the course of decades and another suddenly springing to life on a massive scale — share many qualities...'

“We have to come up with a plan to care for these patients, a plan to do the research that’s needed. It ain’t going to go away,” Aucott told STAT.

'NIH funding for Lyme research has historically been low, but advocates are hoping the spotlight on long Covid will lead to more attention for other chronic inflammatory illnesses. The need is evident in social media support groups..'

'An elevated immune response can be associated with autoimmune, metabolic, neurological, and endocrine dysfunction, said Beth Pollack, a long Covid and ME/CFS research scientist at the MIT department of biological engineering. Tracking symptoms will help scientists better understand the biology of Lyme and Covid, she said.'

'In July, the NIH announced a funding opportunity for research on neurological and psychiatric manifestations of infection-associated chronic illnesses, including post-treatment Lyme and long Covid. It’s one step in the direction of what advocates and some researchers have been asking for: research infrastructure without silos, so murky areas between diseases and body systems can be explored.'
 
Dakota15 said:
Not sure if this was already shared, but I see RECOVER-TLC Workshop Agenda is listed today.

Some familiar names participating include Todd Davenport, Jaime Seltzer, Ziyad Al-Aly, Michael Peluso, Amy Proal, Avindra Nath, Hannah Davis, Ian Lipkin, Steven Deeks, Julia Moore Vogel, etc.
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Unbelievable. In the 'what can be learned from ME and related conditions talk' they have Nath as the sole voice of ME researchers. The NIH is still not reaching out to the wider post viral research community and at this point there are no excuses anymore.
 
KUOW / WBUR : "Long Covid and chronic Lyme pose medical challenges"

Isabella Cueto, a chronic disease reporter with our partners at STAT, joins us to discuss how scientists are studying both conditions in the hopes of discovering new treatments

6-min audio interview, some excerpts:

"Long COVID has made a lot of people aware that the fact there are chronic conditions that can arise from an infection. There's been a lot of attention on these other conditions that have been around for a long time, Lyme being one of those...these chronic manifestations of Lyme disease"

"..now with all the funding into research into Long COVID, that has floated some other boats if you will, and drawn attention to figuring out these elusive questions.."

"..that's the question and the debate right now...is it a protracted immune response to a virus or pathogen...other people think it's an infection continuing that's just not being caught...that's part of what researchers are looking into and trying to understand..."

"...they are trying to find markers...over 10 million people in the US who have Long COVID...this is a big issue...a lot of people that are struggling day to day. Finding answers to these questions are really important."
 
Connecticut Public Radio: 'Protecting yourself from EEE and COVID, plus an update on Long COVID'

'An estimated 17 million adults in the nation have long COVID. We’ll get updates on Long COVID and hear from a patient'

GUESTS:
  • Dr. Ulysses Wu: Chief Epidemiologist at Hartford Healthcare
  • Emily Taylor: President & CEO of Solve M.E./CFS Initiative
  • Professor Richard Gard: Retired Professor of Yale School of Music retired and St Thomas More chapel at Yale
 
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