News from the USA, United States of America

11/22/24, Newsweek: 'Map Shows US States With Highest Levels Of Long COVID'

'Around 400 million people worldwide are believed to have long COVID, and 17.8 million of those are in the U.S., according to medical journal JAMA.'

"We now know that a significant proportion of long COVID patients have evidence for ongoing immune activation, including abnormalities of blood proteins called complement, dysregulation of blood clotting pathways, and activation of endothelium, which lines blood vessels, PJ Utz of Stanford said, adding that this could be linked to cardiovascular disease and brain disease.'

'Discussing future development of long COVID treatment, the Stanford professor said that the "pace of research on long COVID is incredibly fast."
 
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11/22/24, Northwestern Medicine: 'New research shows younger & middle-aged adults have worse long COVID symptoms than older adults'

“Long COVID is causing an alteration in patients’ quality of life. Despite vaccinations and boosters, about 30 percent of COVID patients develop some long COVID symptoms. These findings have an immense public health impact, given that long COVID significantly contributes to the leading global burden of disability and disease caused by the neurological disorders.”

“The impact of long COVID is causing disproportionate morbidity and disability in younger adults in their prime who provide much of the workforce, productivity and innovation in our society..this may have a negative impact on the economy and cause additional burden on the health care system. This study highlights the importance that people of all ages suffering from Long COVID should be provided with the necessary treatment and rehabilitation services to alleviate their symptoms and improve their quality of life.”

- Igor Koralnik, MD, chief of neuroinfectious diseases and global neurology at Northwestern Medicine, who oversees the Neuro COVID-19 Clinic and is the co-director of the Northwestern Medicine Comprehensive COVID-19 Center.
 
NPR: 'Long COVID patients push to see federal research refocused on treatments'

"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign

"What [RECOVER] lacks, really, is clarity of vision and clarity of purpose," says Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate another $515 million of funding for long COVID research, which it says will have a significant focus on clinical trials. At the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is, "to work rapidly, collaboratively, and transparently to advance treatments for Long COVID."

This turn suggests the NIH has begun to respond to patients and has stirred cautious optimism among those who say that the agency's approach to long COVID has lacked urgency in the search for effective treatments.

NPR contacted the NIH several times to ask about plans for this new chapter of RECOVER. The agency did not make anyone available for an interview, nor would it answer written questions via email.

Good science takes time, says Dr. Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long COVID — clinical trials are needed. And that requires money.

RECOVER's deadline to submit long COVID research proposals is Feb. 1.

More on RECOVER here: USA: The RECOVER Initiative - Long Covid research
 
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I am concerned that LC patients are not understanding how medical science works and why there are no treatments, and that pushing too hard too early for them is unlikely to end well.

Medical science has a lot to answer for over their gross long-standing mismanagement, and worse, of LC and related conditions, and deserves a very serious kicking over it. I do understand and have every sympathy for patients' frustration and anger.

But there are no easy quick shortcuts to good science, and hence effective safe treatments. There is no lack of other unrelated diseases have been studied far more extensively than LC and related conditions, but do not yet have good treatments either.

Be careful about what you demand, without knowing the full picture. The hard reality is that there may very well not be any good treatments any time soon, maybe not in the lifetime of many current patients.

Patients have to accept that. It is a shit deal, but if it is the reality, then no point in pretending otherwise. Wishful thinking is not a viable strategy.

What patients do have is the absolute right to demand and get adequately funded, robust and honest science, and adequate support until good treatments are available.
 
New York Times: 'A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves'

'For people with debilitating long Covid, the new year heralds a cruel anniversary: Some are experiencing their fifth year with the agonizing illness. And despite the roughly $1.6 billion that the National Institutes of Health has received for long Covid research, not a single drug has yet been approved for that purpose. Amid this frustrating delay, the Patient-Led Research Collaborative, an organization that has elevated the voice and expertise of those who experience this illness, has been raising funds and directing them to promising research projects — and punching far above its weight.'

One baffling long Covid symptom that the survey brought to light was what’s known as post-exertional malaise.

They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.

The lead author, Rob Wüst, is a young scientist in the Netherlands who not only studies exercise but also participates in it daily. He told me he had always thought that exercise was good for everyone, even those suffering from a chronic disease. But when he received a call from a long Covid clinician looking for answers, he was ready to jump in.

McCorkell told me that the success of the group’s first round of research funding proved the value of having patients involved in these funding decisions — and in circumventing the lumbering medical bureaucracies that have taken much too long and accomplished much too little.

That’s why I invite you to donate to Patient-Led so it can do so again.'
 
Radiological Society of North America: 'Long COVID Brain Fog Linked to Lung Function'

'Researchers from the University of Iowa in Iowa City set out to assess associations between pulmonary MRI gas exchange, structural and functional brain MRI, and cognition in long COVID patients'

'The results showed that lower pulmonary gas exchange may be associated with cognitive dysfunction, as well as lower gray matter and white matter volumes in patients with long COVID. In addition, the researchers observed significant relationships suggesting that increased cerebral blood flow is associated with decreased gas exchange in long COVID patients.'

Staab said larger studies are needed to investigate the association between gas exchange and cerebral blood flow in long COVID.

"This relationship could be a compensatory mechanism where lower lung function is compensated by higher cardiac output and higher brain perfusion," he said. "It's also a possibility that the disease mechanism that impairs pulmonary gas exchange also leads to higher brain perfusion through downstream vascular injury in both lung and brain."
 
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Healio: 'Post-exertional malaise assessment ‘becoming more important’ for long COVID in rheum care'

“Post-exertional malaise is the worsening of fatigue & other fatigue-related symptoms after exertion,” Kaleb Michaud, MD, Univ. of Nebraska Medical Center

“Post-exertional malaise assessment is becoming more important in those with long COVID, as we are assisting those with long durations of this condition,” Michaud said.

Michaud described the associations between post-exertional malaise, disease activity and COVID-19 as “important,” but said further research is needed. “They require additional understanding,” he said
 
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11/26/24: “American Lung Association Awards Charlottesville Researcher Grant to Study COVID-19”

“This research could significantly enhance the understanding of the cellular and molecular basis..could lead to new ways to prevent or treat..long COVID”

“The American Lung Association in Virginia announced that it awarded In Su Cheon, PhD from the University of Virginia a $50,000 Catalyst grant, renewable for an additional year for a total of $100,000.“

"Dr. Cheon’s research aims to understand how certain immune responses can lead to chronic lung conditions after viral pneumonia, like COVID-19. Dr. Cheon and others have identified a novel immune cell population, called CD4+ tissue-resident helper T cells
which stays in the lungs and helps fight off secondary viral infections."
 
Sean said:
But there are no easy quick shortcuts to good science, and hence effective safe treatments. There is no lack of other unrelated diseases have been studied far more extensively than LC and related conditions, but do not yet have good treatments either.
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Unfortunately, there is a wildly popular alternative to science, which medicine loves even more than science. And it strongly reinforces this demand.

I noticed from recent days a study, I think from the Netherlands, from which followed some critical coverage of how LC patients are resorting to alternative medicine and all sorts of dubious quackery. And then you look at what medicine, and the health care systems, have been pushing for years and there is zero difference, including in messaging and framing. I think it even has the acuseeds crap. And yoga, of course. But even though many MDs will criticize this, they never clue in that they promote the exact same thing.

Hard to see the patient community not falling for this trap when most experts are the biggest cheerleaders. MDs seem to have mostly abandoned scientific research as a way out of this. Too long, too hard, might as well just have a sing-along looking at pictures of pets doing yoga. It makes no difference to them anyway. They'd rather fail and blame TikTok and social media than do the kind of real work that demands that they do work on themselves.

In the end it's like how mask mandates have become "I'm not wearing a mask, I'm not forced to". Which means the only way out is to force them to do things they don't want to do. But there is no way to do this, and they would oppose it far stronger than they have opposed sacrificing millions of vulnerable people, which they have basically not opposed at all. We're at some nexus of decades of failure and kicking the can down the road, but they still won't do it. They'd rather push CBT and forcing disabled people to work when they can't than change anything.
 
11/26/24, 'ME/CFS and Long COVID: What's New? with Prof. Anthony Komaroff'

Komaroff: 'The immune system sees the battle isn't over...with ME/CFS & certainly with Long COVID...that ongoing battle that the immune system has to fight..leading to the ongoing symptoms..'

'There at least three million people in the United States alone many millions more around the world with ME/CFS. There are 10 million with Long COVID, many would say more than that, just in the US - 70 million around the world. That has huge implications for our country, for our economy. There's about 2% of the workforce in the United States right now can't work because of Long COVID."

"There is no doubt that there's much more interest in and resources for studying these illnesses now but but I'd urge people people to contact your representatives in Congress, contact the director of the National Institutes of Health, and really urge that there be more for studying ME/CFS as part of the Long COVID Initiative, as part of the Women's Health Initiative - it's by investing more in figuring out what's going wrong in the body that we're going to have the good diagnostic tests and most importantly the effective treatments.."
 
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11/26/24, Long Covid, MD: “Don't Sleep on Your Power" Senator Lindsey Port on Long COVID Advocacy

Port: “I think the thing that gives me the most hope - I know how change happens in the legislature, in state capitals - it happens by people telling their stories”

“And I know it sounds really cliche, and people talk about all the high-priced lobbyists and special interests and things like that. And I would tell you for me and for most of my colleagues, the number one thing that is most effective in getting us to not just agree with a bill or be a yes vote on it but to become champions for those things is having a real person come into our office or show up on my Zoom screen and tell me their story and tell me how this piece of legislation in front of me can change their lives.”

“It is the most powerful tool in state government, in federal government. It is easily the most powerful tool. That is something that we really can do to change the system.”

“I am in awe of the work by Long Covid and ME/CFS and other chronic illnesses. I am in awe of the way people have come together to support each other. And I think we can use that power to demand change at the state level.”

“I think the other thing I'm thinking about is how can we lessen some of the burdens, some of the barriers that are in place. And for me, that looks like I'm working on a bill for what's called the Office of Patient Protection. We're also looking at potentially adding a physician side to that as well, which I think you think of as a place where you can come with your barriers.”

“There’s all sorts of these barriers that those of us with chronic illnesses have to fight through every day in a way that specifically impacts our health. Like the barriers aren't just slowing the system down. They are worsening our health while they're happening.”

“…with how widespread Long Covid is, which I think we're still learning, and people are still emailing me and saying, oh my gosh, I have symptoms really a lot like yours.”

“I agree both on the federal level and in Minnesota, we passed funding for long Covid, both research and outreach to communities, particularly communities of color that we know were hit hardest by Covid, those frontline workers right away. To do outreach to them, we put money in. It hasn't all been spent, but it has all been allocated.

And so that is a really critical point for future administrations to not be able to claw that back.”
 
PS: 'Millions Are Suffering From Chronic Fatigue Syndrome — So Where’s the Urgency?'

'ME/CFS had the lowest NIH funding relative to disease burden, estimating that it would take $203 million dollars to properly address 2017 levels of burden'

'Dr. Bonilla confirms that many different viruses have been linked to ME/CFS, COVID included. "Around 60-70 percent of the patients [referred to my clinic] have a viral illness at the beginning of the disease," he says. "[ME/CFS] is a post-viral illness."

'The connection between long COVID and ME/CFS has helped raise awareness about both conditions post-pandemic, offering some new research into the processes at play. It's a welcome change for patients and experts like Dr. Bonilla who are hoping for more investment in ME/CFS and long COVID research. But there's still a long way to go when it comes to representation, care, and stigma.'

'In a glimmer of hope for the ME/CFS community, a global team of researchers recently received funding from the NIH to study cellular changes in the muscle tissue of those with ME/CFS.'
 
KQED: 'Stanford Doctor Tapped for Key Post by Trump Advocated for Letting COVID Spread'

'For some Bay Area patients with long COVID and their advocates, Bhattacharya’s nomination is especially concerning'

Charlie McCone, 34, has had long COVID since March 2020. The San Francisco resident said many in the long COVID community were already frustrated with how the NIH was prioritizing funding and research, though they had seen recent signs of progress.

“Zero diseases in the history of the world have been solved with a one-time investment of funds,” he told KQED. “We have to be serious about having substantial funds on an annual basis to actually get somewhere with this condition.”

McCone praised the direction of the NIH’s approach under Dr. Jeanne Marrazzo, who was named director of National Institute of Allergy and Infectious Diseases last year. But he noted that advocates are still pushing for annual funding on long COVID research and to give it a permanent home in the NIH.

“If we had allocated a one-time fund to the NIH for HIV in the mid-’80s … and decided we were going to just stop giving funds because we didn’t see a return on investment, that would have been deemed as completely irrational and completely nonsensical,” McCone said. “And so I think anybody who’s taking that perspective now, I think the same applies.”
 
11/29/24, 'The Patient-Led Research Collective Part 1 ft. Lisa McCorkell, Gina Assaf & Letícia Soares'

LM: "Very early on in the pandemic no one was really taking these symptoms seriously. They weren't really being covered in the media, and so we felt like we had to take this into our own hands. Our doctors were dismissing our symptoms, and really not believing us or not giving us any resources."

"..for things like reviews we've been able to be co-authors on two reviews at this point. The first one was with Dr. Eric Topol last year in 2023, and then this year with Dr. Aly and I think both, especially the first one, have gotten just a ton of attention. It was the third most accessed research paper in 2023 across all disciplines. Yes, there's a lot of attention on Long COVID."
 
48 Hills: 'Long Covid: The search for answers inches forward'

'Is the tide finally turning on research into the chronic illness—and funding at the federal level for prevention and a cure?'

“I am optimistic about RECOVER-TLC,” McCorkell says

“The Moonshot,” Davis explains, “calls for not only $1 billion per year in research funding for 10 years, but also for surveillance, public education, medical education, outcome assessments, etc. This is a rare opportunity, and we need this to pass—Long Covid is going to affect literally every family in the next few years, and this kind of funding is the only way we’re going to be able to find a cure.”
 
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