News from the USA, United States of America

8/13/23, TLC Sessions - Living with Long Covid: Episode 62: Prof. Harlan Krumholz (Yale)

“Of course, you're not alone, ME/CFS, there's a whole range of illnesses that I believe one day we'll understand. And then we'll look back at the cruelty…”

 

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."

 

Yup.

It's OK, Wes, we have one here.

And maybe try to reduce the spread of the virus and remember that the virus is probably only here because of empire-building by scientists.

 

"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/

 

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...'

 

Kansas City Beacon: 'Weathered COVID before? Scientists say every new infection puts you at risk of getting long COVID'

'The sometimes debilitating illness infects a third of people who come down with a case of COVID. Scientists and doctors are scrambling to understand and treat it.'

'She was told exercise would make her better. Now she understands it only made her worse.'

'U.S. Sen. Bernie Sanders of Vermont has introduced legislation that would invest another $1 billion a year for a decade in research, provider education and public education.'

'Scientists have several theories about how long COVID strikes, and they are starting to believe that there may be more than one answer.'

'For example, in some cases, the immune system, which has been activated by the initial viral infection, simply doesn’t turn off once the virus is gone. That means a person’s own immune system can damage the body.'

'Another theory is that when someone has long COVID it could be because they still have traces of the virus in their body.'

“The patients are the experts with long COVID,” she said. “We’re the ones going through the jungle with a machete making the path.”

 

Pittsburgh Post-Gazette: 'What is POTS?'

'An orthostatic intolerance condition sees an uptick in diagnoses'

“...I think it’s more that COVID has brought more awareness to POTS...we saw a huge, huge increase, because it's a viral trigger"

 

Yale Medicine: 'When Long COVID Worsens Preexisting Chronic Conditions'

'As someone who suffers from both ME/CFS and Long COVID, Billy Hanlon—in his role as the director of advocacy and outreach at the Minnesota ME/CFS Alliance—also advocates for advancing research into these conditions'

"...I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses."

"First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.

"You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives"

"Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID."

"Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses."

 

Politico: "AI sees a lot of long Covid"

"The number of people with long Covid could be three times as high as previous studies have found, according to new research out of the Boston health system Mass General Brigham"

"What’s next? Estiri and his colleagues hope the tool will enable more doctors to diagnose the condition and help advance the study of treatments."

 

2/6/24, Politico: 'Top HHS official warns of ‘medical refugees’

Rachel Levine came to HHS in 2021 to oversee the department’s post-pandemic pivot.

The assistant secretary for health — also admiral in the Public Health Service Commissioned Corps — has established the Office of Long Covid Research and Practice as well as the Office of Climate Change and Health Equity and has spoken in favor of youth access to gender-affirming care.

'On long Covid: HHS is working with the National Academies of Sciences, Engineering and Medicine to get to a working definition of long Covid, Levine said. Deputy Assistant Secretary Michael Iademarco said the idea is to cover the range of symptoms patients experience and give them a reimbursement pathway for care.

On criticism that NIH-led long Covid research isn’t focusing enough on treatment: “Sometimes research takes as long as it takes to have results,” Levine said. “It takes longer than people want, but we want to make sure that we have robust results that will actually help patients.”

Levine added that the long Covid office brought on a new director last month, and that the office is developing an advisory committee on long Covid to help make recommendations on the federal response to long Covid. The office plans to release a report to detail next actions.'

 

11/13/24, INIM: "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID"

'Dr. David Systrom shares new research on neurovascular issues in ME/CFS and Long COVID. The study looks at how both conditions have similar issues.'

https://www.youtube.com/watch?v=TD-eSXKvfq0

 

3/20/24, Slate Culture: "People Feel Like They’re Drowning": The Long Covid Survivors Left Behind

“These people have nothing to really lean on for curative treatment, nothing..zero FDA approved medications for treatment of long COVID. This must change.”

“We've had people who've come to us with debilitating fatigue and neurological changes. And what they're saying is they can't even leave their apartment, much less their bedroom. And what they're looking for is solutions around how to actually feed themselves.”

“What we have in our hands is a public health crisis, which has not been adequately defined by the medical community or our leaders in government, etc. We're dealing with almost an underbelly of society that crosses cultural and socioeconomic backgrounds.”

“Houston, we've got a problem here. And the symptoms are things like ongoing breathing problems, profound fatigue, which we called PEM, post exertional malaise. And then this issue of brain dysfunction where you can't think, you can't process, right?
Your speed of thinking is severely impaired. It's like a brain that's swimming in molasses is the way some patients describe this.”

Host: “How would you rate our response to this in terms of Long COVID?

(Wes Ely, Vanderbilt): I am by the way, fairly middle of the road, not overtly political person, but I'm willing to do this. I think we're at a six and a half at best, maybe a six, meaning five is just barely making it. We are not in the moderate to excellent category.
We're in the not quite okay. I think we're getting there. I mean, we are getting more funding.”

"...the large networks are bogged down with a lot of rigmarole, a lot of bureaucracy that is preventing people from getting answers. And so we have to somehow overcome that. I want to point out that I think that people feel like they're drowning.”

 

5/28/21, The OSA Insider: 'Long Covid/PASC with Dr. Andi Levine'

“Really debilitating fatigue..patients tell me that their heart will start racing with really minimal exertion..they'll climb a flight of stairs..heart rate will be 150 beats per minute"

“There's a lot of theories about perhaps what's going on. Perhaps there's some ongoing inflammatory or immune reaction that's happening in some of these patients that is precipitating these symptoms that they have. There's some reports that there's ongoing sequelae of the virus itself, that perhaps what we're seeing is sequelae of immunothrombosis or thrombotic events that these patients are prone to getting clots and microthrombosis. I think there's a lot of theories circulating that it's kind of this persistent, prolonged, low-level inflammatory immune response.”

“And we've seen this before with other major viral illnesses too, haven't we?"

"Yeah, interestingly, actually SARS-CoV-1 and actually MERS have a similar post-viral syndrome”

 

8/3/22, JAMA Author Interviews: “Long COVID: The US Federal Response”

Admiral Levine: “Well, we are hopeful that there will be more research for funding by the NIH, by CDC, by the VA, by the private sector..we are hopeful that there will be more funding”

https://podcasts.apple.com/us/podca...federal-response/id1599387877?i=1000574903880

 

7/10/23, Health Science Radio: “CU Anschutz Takes Lead in Unraveling the Mysteries of Long COVID”

“We’re looking for patients that have fatigue and kind of exercise intolerance…that have more neurocognitive dysfunction…this autonomic dysfunction..”

“The Admiral has been quoted in previous interviews saying that with regard to long COVID, we need treatments yesterday. So there's a real urgency, obviously”

“There may be ongoing virus in their spinal fluid that's impacting their brain. And we might treat that differently with maybe an antiviral or an anti-inflammation medicine.”

https://podcasts.apple.com/us/podca...ng-the-mysteries/id1512022221?i=1000620624720

 

11/10/23, Health Chatter: Long Covid with Kate Murray & Jay Desai, Long COVID Program Minnesota Dept. of Health

“post-infectious acute infection chronic disease is not unique to COVID..not a new phenomenon..magnitude…getting more attention than it has ever..”

“MDH is really trying to help spread the word about long COVID, including to providers.”

“There is a subset of folks who are being disabled by these infections and their symptoms, they may even seem like the acute infection resolves and they start having these new symptoms several weeks or even a few months later. And that's kind of this, it used to be called chronic fatigue syndrome.

They now call it myalgic encephalomyelitis or ME/CFS. For those folks, their symptoms do not get better and they may even get worse to the point of disability. And what can hasten that trajectory is trying to push through those symptoms and trying to return to normal, go back to your exercise routine.”

“The disability is so bad because of this, that that's a whole other group who are severely impacted that we have to think about how do we support them, clinically and at home moving forward”

“Folks have experienced this after influenza as well, but it is debilitating fatigue or even flu-like symptoms that crop up after any physical exertion or even mental and emotional exertion. Some people have what's called POTS…”

“So that's a result of your autonomic nervous system having dysfunction and that could be, you know, damage from this ongoing inflammation from the virus. We're still understanding some of kind of those underlying mechanisms as Jay mentioned, but these are really debilitating conditions. And so that's definitely of interest to us, that whole group of folks who have been largely ignored or even dismissed by medical establishment and really not part of public health so much.

We cannot ignore them any longer.”

“…maybe COVID can help raise the profile…what it has allowed, I do think, both in our public health world…to have more conversations, across conversations around the relationships between chronic disease and infectious disease, post-infectious disease.”

 

I’m not following, @Sean….(might be cog dysfunction right now)