News from the USA, United States of America

10/27/20, Science: 'Every minute counts.' This immunologist rapidly reshaped her lab to tackle COVID-19'

'For Akiko Iwasaki, the pandemic has brought new research priorities—and new urgency'

'Now, she is turning her attention to long-haulers, people who suffer a bout with the virus and don't fully recover.'

'Iwasaki's latest passion is long-haulers who can't shake symptoms like fatigue and brain fog '

"We really want to get to the bottom of what's going on," she says impatiently. Until then—along with so many other researchers—she'll be in overdrive."
 
11/10/22, WBEZ (Chicago) Reset with Sasha-Ann Simons: “Long COVID Continue To Impact Americans”

“What we do see frequently in the health centers is fatigue and brain fog. Those tend to be the predominant symptomatology that we'll see on a regular basis.”

Putrino: “I tend to think that we should stop referring to Long COVID as a mystery because it's not a mystery anymore. It's a post-viral illness. And it's rapidly becoming one of the most researched post-viral illnesses on the planet. And so every day we're learning a little bit more and more about potential biomarkers, potential treatments, new symptoms and the mechanisms behind new symptoms.”

Lowenstein: “I don't think that the federal government was prepared for the loud way in which we kind of bust through the doors in order to make ourselves known and heard.”

“I would say educate yourself on access issues, educate yourself on invisible disabilities, and on infection-associated chronic illnesses because Long COVID is not the first post-viral illness of this type. There are millions of people who have been sidelined from society for decades for diseases like myalgic encephalomyelitis, chronic fatigue syndrome, Lyme, etc. I would also urge folks to get creative with caregiving.”
 
2/30/22, Long COVID Podcast: "Ziyad Al-Aly"

Al-Aly: “Let’s not waste this crisis. Let's learn from it so we can not only help people with LC, but also understand the post-viral condition better so we can really offer people with ME & other post-viral illnesses treatment...”

"And I think we ignored that for a long, long time. People in the ME/CFS community, they will tell you that, we've been suffering for 20 years, we've been suffering for 10 years, I've been suffering for 15 years. And the condition has been largely ignored. People diverted their attention to other things and they ignored this chronic fatigue syndrome. And to our peril now, had we invested in understanding it 20 years ago, we would be better prepared now to really meet the challenge of Long Covid."

"But we didn't, we didn't, we missed all that opportunity. So hopefully we don't miss the boat again. Hopefully what we're going to do now is not miss the boat again or not drop the ball again And then try to seize the moment now and understand Long Covid. Not only to help people with Long Covid, but also as a silver lining as well of this pandemic, to be able to like once and for all try to understand the post-viral condition. And again, the idea that viruses lead to long-term consequences isn't really new.”

“People chose to ignore it and chose to not do research on it and chose to sweep it under the rug. And as a result, now we're having to really literally discover the A and B and C of post-viral condition. We have to start from scratch, from the basics, because even the A and B and C of the post-viral condition have not been well understood.”
 
4/11/22, JOSPT Insights: “Less is more—the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr Todd Davenport”

“The etiological question is far from settled. We know from much of the literature in systems & cellular physiology that there is a disruption of the substrates involved with oxidative metabolism. So everyone who is getting a little anxious because I'm going to talk about the Krebs cycle and relax because I'm not going to do that, but that's basically the cycle that appears to be disrupted based on the metabolomics data that we have from myalgic encephalomyelitis and that sort of area of research.”

“At the systems level, we know that there is a fluctuating capacity to use oxygen for metabolism, which makes sense because at the cellular level, if you're not able to use oxygen, then it should show up at the systems level as well. And our methodology with the Workwell Foundation, with whom I'm an unpaid scientific advisor, has shown that there is impairment in the volume of oxygen consumed, particularly at what we call the ventilatory anaerobic threshold, which is the point at which anaerobic metabolism
tends to start to predominate. So people go into early anaerobic metabolism. They run out of the ability to use oxygen. A useful analogy is often the credit card analogy.”
 
8/10/24, Long COVID the Answers: Post-Exertional Malaise (PEM), Long COVID & its Management with Professor Todd Davenport

“As a physical therapist & as an exercise scientist, one of the things that PEM is to me is a bio-energetic phenomenon."

“So it's almost as though the virus has hijacked the cellular machinery of energy production and utilization. And so there's not enough left over for daily functioning. That's where my research and clinical interests have been over time.”

“Once a person has post-exertional malaise, it strikes me that this is a different process that can't fully be explained by viral persistence. I think the literature backs me up on that.”
 
10/4/24, Active Mom Postpartum: 'Dr. Todd Davenport - Exploring Chronic Fatigue & Safe Exercise Post-COVID'

“There are things that give me specific hope related to ME and ME related to Long Covid and so forth. First, that we're having this conversation”

“I think the other thing that gives me hope is the data coming out from the pathophysiological side regarding some of the underpinnings of ME and ME like conditions. I think that will ultimately yield fruit in terms of curative treatments, much more than what we've played with in terms of cognitive behavioral therapy, trying to talk people out of feeling sick, which has not worked, trying to exercise them, which we know from our work and others, is not good for people. So trying to move towards pharmacological and non-pharmacological treatments that can actually influence what's happening in the body, that gives me hope.”
 
4/18/22, JOSPT Insights: Managing the condition that breaks all the rules - pacing & post-exertion symptom exacerbation w/Dr Todd Davenport

“I'm encouraged by the research focus & dollars that have gone to understand the pathophysiology of long COVID..even as I'm aware of the idea that it may be displacing attention and resources away from other conditions that also share post-exertional symptom exacerbation and post-exertional malaise. And so there are some promising research hypotheses.

It's unclear to me right now whether those research hypotheses are specific to long COVID, or they might generalize well to the other long conditions, long mono, long Lyme, long enterovirus and so forth. I'm just not sure yet, but it's a source of optimism that I have. We can be involved because again, going back to believing patients, finding credibility in symptoms, that's a really powerful basis to establish phenotypes.”

“Post-exertional symptom exacerbation requires a less-is-more approach. We have conditioned ourselves and our payers and our advocates in government to a more-is-more approach. More-is-more has the potential to cause harm in this case.”
 
6/16/23, TLC Sessions - Living with Long Covid: Dr. Wes Ely (Vanderbilt)

“it's very frustrating to hear & to listen to the people who have long Covid & have them describe the misery..the harrowing circumstances..I feel guilty & shameful we haven’t provided more answers”

“And when the government assigns a billion dollars to do research and we have no therapeutics and essentially no adequately completed, robust, randomized trials, I think that the medical community has failed the Long Covid community. And I'm part of it.”
 
8/29/22, TLC Sessions - Living with Long Covid: Episode 43: Dr Tae Chung (Johns Hopkins)

(mentions Dr. David Systrom and his work as well)

"So my hypothesis is that probably at least some subset of long Covid-POTS patients, again, this is my hypothesis, is that it's probably sympathetic nerve denervation, fancy word, we call it sympathetic basal motor dysfunction denervation.”

“And there's some indirect evidence suggesting that sympathetic nerve is dysfunctional in parts of long-covid patients. And basically, given that post-infectious nature, I suspect this is some kind of inflammatory, maybe autoimmune reaction, just like Guillain-Barré syndrome, they have a virus infection, the virus is all gone, maybe lingering, I don't know, but I don't know the answer. I know there's a lot of controversies there. But there's probably our bodies attacking our sympathetic nervous system, just like in Guillain-Barré syndrome. But instead of Guillain-Barré syndrome, attacking large fibro-sensory nerve, this is probably attacking the sympathetic nerve and denervating nerve that's regulating the blood flow. And hence we have this exercise intolerance and brain fog and other things.”

“You don't really see that kind of nerve damage in most POTS patients. But actually, pretty good portion of our long-covid POTS patients, we see what is called small fiber neuropathy.”

“They do not necessarily have these typical painful small fiber neuropathy symptoms where they present with severe burning sensation..to me, what that means is that it really just suggests that some portion of small fibers can affect it. My suspicion is autonomic nerve fibers.”
 
10/7/23, From TLC Sessions - Living with Long Covid: Dr. Michael Peluso (UCSF)

“We know from lots of other infections that there are infection-associated chronic illnesses that have been really poorly understood and horribly stigmatized for decades…”

“What I always say is that Long Covid is really our best opportunity to understand the biology of these poorly understood conditions because there was this unique confluence of factors that happened, especially in the early days of the pandemic…”

“And so I really think that this is our best chance to understand not only Long Covid, but also similar conditions that are thought to be related to other infections.”
 
2/9/24, TLC Sessions - Living with Long Covid: Benjamin Abramoff (Penn)

“One thing I'll go back and say, at least here in the United States, the clinical recognition of post-viral syndromes & Long COVID particularly has gone up considerably…”

“…there's definitely a shift. The amount of doctors looking at these diseases is not just long Covid, but ME/CFS and Lyme and all these other things that are post-viral diseases…”

“There's a huge amount of knowledge that is being pooled. I mean, I sometimes think the field of journalism could do with a little more of this kind of collaboration. I agree that some of the insights that we get from long Covid are going to spread beyond long Covid directly."

"I think some of the ways we look at the immune system and some of these metabolomic questions may spread beyond this specific illness.”
 
9/18/23, SCCM (Society of Critical Care Medicine) Podcast: 'The Long & Short of Long COVID'

Wes Ely (Vanderbilt): " I think if we could do three things...we need NIH-funded, VA-funded, foundational-funded prospective RCTs of the different things that we think are the key factors in the story of long COVID, the pathobiology, which are antivirals for the persistence of virus. We need immunomodulatory agents that will quell the immune activation and the prolonged inflammation. We need better science."

"Second, we need a better approach to creating a community for these patients, so that they can talk to one another."

"The third thing is that people have to have a way forward financially. When they lose their job, I mean, I can’t tell you how many of our families end up homeless. They first lose their electricity, then they lose their house, and they lose their life flow to their family, which is their income, and they can’t get disability...we’ve got to do better scientifically and from a humanistic community perspective and also from a government perspective to support them financially."
 
"Creating a research home for ME/CFS, Long Covid, and others"

November 5, 2024

"Despite the significant disease burden, Myalgic encephalomyelitis (ME), previously known as chronic fatigue syndrome (CFS), lacks effective diagnostics and therapeutics. Emily Taylor, President and CEO of Solve M.E., explains why dedicated research for Infection-Associated Chronic Conditions and Illnesses (IACCIs) such as ME/CFS is vitally needed"

https://www.openaccessgovernment.or...home-for-me-cfs-long-covid-and-others/184620/

https://twitter.com/user/status/1854170895167742074
Click to expand...
 
Boston Globe: ‘We just want to be heard’: Long COVID patients still feel invisible'

'Scores of long COVID patients reached out to the Globe after a recent story on doctors finding new ways to manage the condition'

'“Primarily my patients feel left out,” said Dr. Ziyad Al-Aly..'

Testing in the clinic of Dr. David M. Systrom, the physician at Brigham and Women’s Hospital profiled in the Globe story, she said, later revealed the disease had damaged her lungs, heart, and blood vessels and compromised her body’s ability to circulate oxygen..'

'There’s so little guidance on how to get better. The more knowledge that is out there, the better chances of identifying patterns and finding treatment and finding solutions...'
 
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