News from the USA, United States of America

KSAT: “Vindication for patients as Long Covid is declared official medical condition”

'Newly accepted Long Covid definition opens door to healthcare opportunities’

‘Patients all over the US went through hell trying to convince doctors and workplace managers that something was seriously wrong with them.”

"Taylor (16 years old) began having bizarre new symptoms that showed up immediately after she got COVID-19 in 2022...the fatigue was really extreme…”

'Taylor’s mom, Amy Presson, had to advocate for her daughter. “How do you tell a teenager that this is the life you’re going to live every day with all of this pain and fatigue? And I’m just like, ‘I’m not giving up,’” Amy said.'

"However, those tears dried up when they met Dr. Monica Verduzco-Gutierrez from UT Health San Antonio, who listened to their story and diagnosed Taylor with Long Covid. Part of her passion is that she’s also a patient. Her main symptom has been severe fatigue."

'There are only about 40 Long Covid clinics in the U.S. “That’s not even one per state,” Gutierrez said. “There needs to be more.”

"Amy’s husband (Taylor’s dad) also has Long Covid, but sadly has not responded to any treatments. “His symptoms, dizziness, fatigue. He had lots of falls, had to start using mobility devices, cane, walker, a standard wheelchair..just recently, she ordered him a custom wheelchair because he can’t even sit upright and hold his neck up. He has such extreme muscle weakness that he has to be fully reclined,” Amy said."
 
The Conversation: 'Long COVID puzzle pieces are falling into place – the picture is unsettling' by Ziyad Al-Aly, Washington University in St. Louis

Al-Aly: “The intense scientific effort that long COVID sparked has resulted in more than 24,000 scientific publications, making it the most researched health condition in any four years of recorded human history.”

'...many health effects of long COVID, such as post-exertional malaise and chronic fatigue, cognitive impairment and autonomic dysfunction...'
 
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KSL (Salt Lake City, UT): “More than 3,000 patients treated at University of Utah Long COVID Clinic since 2021, cases ‘still around’”

“Also what we call post-exertional malaise…24 or 48 hours later, you’re exhausted, can’t get out of bed, can’t function as well,” just to name a few.”

“Pederson still struggles with brain fog and memory loss”

“The more we learn directly helps these patients, but also potentially patients in the future or other conditions that may be kind of related,” Brown said.

“It’s so validating, to be like I am not crazy, these people believe me.”
 
Yale Medicine: 'New Evidence Supports Autoimmunity as One of Long COVID’s Underlying Drivers'

Excerpts:

'New research offers evidence that autoimmunity—in which the body’s immune system targets its own tissues—is a driver in some cases of Long COVID.'

"We believe this is a big step forward in trying to understand and provide treatment to patients with this subset of Long COVID.'' - Akiko Iwasaki, PhD

"Several factors prompted Iwasaki’s team to zero in on autoimmunity as one of Long COVID’s drivers. First, there was the persistent nature of the condition. “This suggested to us that there is some chronic triggering of an immune response that is pathogenic,” she says.

'Furthermore, researchers are developing other biologics, or drugs produced from living organisms, that may also help Long COVID patients, including FcRn inhibitors. FcRn is a receptor that binds to antibodies and recycles them. Through blocking this receptor, these drugs can reduce levels of circulating antibodies. This type of drug was recently approved by the Food and Drug Administration (FDA) for the treatment of myasthenia gravis, another kind of autoimmune disease.'

'It’s a first step, but I think it’s a big one.” Iwasaki’s team is currently expanding these antibody transfer studies to other post-acute infection syndromes including myalgic encephalomyelitis/chronic fatigue syndrome.'
 
The daughter of a scientist and a supporter of diversity in STEM, Harris’s prospects have stirred optimism among scientists.

Here, Nature talks to policy analysts and researchers about what a potential Harris administration might mean for science, health and the environment.

LINK
 
LA Times: “Long COVID risk has decreased but remains significant, study finds”

“…they’re significantly affected, and some of them are profoundly disabled,” said Dr. Ziyad Al-Aly…”

“One leading theory of the root cause of long COVID is that the coronavirus persists in the body long after an acute infection is over, Al-Aly said”

“The severity of long COVID varies from person to person. Some might experience mild cognitive dysfunction or fatigue, but can still accomplish daily tasks like taking their children to school or walking the dog. Others can suffer such “debilitating fatigue that they’re really, really, really profoundly disabled by it — they cannot get out of bed ... they cannot literally perform their activities of daily living,” Al-Aly said.”
 
https://twitter.com/user/status/1816908633713836059



"After rigorous review of 60 applications, we are very pleased to announce our 2024-2027 Long COVID Grantees"

"We were honored to receive an abundance of excellent proposals – many more than we could fund! These nine incredible organizations are well-equipped to improve the lives of people and communities burdened by long COVID and related conditions."

"The Grantees are taking on a variety of objectives, such as assessing the impacts of long COVID on the health and needs of their communities, addressing disparities, raising awareness, reducing stigma, and improving care and support for those most affected. Grantees will also participate in a Grantee Network to increase coordination, share learnings, and contribute to program evaluation."

https://twitter.com/user/status/1816919212004376996
 
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(60-min interview)

Columbia Invents, 4/13/22: “Ian Lipkin”

“The advantage for people with ME/CFS…is that we may get a better understanding, more insights - into how ME/CFS develops as a function of long COVID”

“some people with post-acute COVID syndromes appear to have something that looks very, very much like ME/CFS. But it's not going to be all people. We need to be able to see whether or not there are things that we've learned in ME that can give us insights into long COVID & vice versa.”

“And with ME/CFS, we've found specific abnormalities that are, for example, we found that there are differences in the people who have people who are women and men as a function of estrogens, right, they're very clear links to specific sex hormones. We know this not only because there's a sexual dimorphism, but in addition, there are differences in people who pre-impose menopause. And those abnormalities that we find in blood include responses to bacterial and viral triggers that most people would shrug off that they can't.

And these are manifest not only with immunological abnormalities, but metabolomic disturbances as well. So we find abnormalities in what's known as the Krebs cycle, the respiratory cycle, which is essential for energy production. But not just energy as we think in terms of being fatigued, but the same systems are likely involved in the brain.

So this may account for brain fog…As far as I'm concerned, it's all about trying to find, it's all experimental pathology. What can we learn about causes of disease? Infections are very, very useful in thinking about disease.

I envision we're going to be able to use viruses as vectors to treat disease, too. So there are lots of different ways of looking at that…So I still have a lot of work to do”

“I think that, you know, long COVID..these post-acute syndromes…requires some dissection. Right now, we're lumping them all together. And I think that's not appropriate.

There are at least two groups. One is those people who have structural damage, and the structural damage accounts for the problems that we see. And I described one example of how that might occur.

Right? If you have somebody who has a mismatch between oxygenation and removal of carbon dioxide and the vascular supply to that portion one, that's one possibility. Or people who have renal dysfunction or hepatic dysfunction or cognitive dysfunction as a result of infection of blood vessels that supply certain organs.

That's sort of in one basket. And the other basket, and I'm talking about extremes here, are those people who have some sort of different response, which is presumably triggering innate and adaptive immunity that results in this damage. And there's always going to be a challenge in recognizing the overlap, because you don't necessarily have just one or the other.

So you have to tease these things apart, because the approach to management is probably going to be different. And so one of the things that I really want to do is to find support to investigate this. And because, as you mentioned earlier, we've been doing a lot of work with myalgic encephalomyelitis / chronic fatigue syndrome for several years now.

Actually, I've been doing this really since 1997.”
 
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ACT UP NY has issued an apology on Twitter on some recent posts which later got deleted.
Haven't followed this in detail, but I think the deleted posts were about something in the line of people not being responsible for the consequences of not taking measures against Covid infections as wearing a mask, and that reducing infections is a matter that needs to be resolved at a higher level. This caused a lot of debate that today's Twitter thread is addressing.

In the Twitter thread they also mention ME:

We also thank everyone from the disability community who offered up their labor and limited energy to voice how they had been hurt and to help us craft a genuine apology. We stand with you in urging ACT UP to commit time and resources to educating its membership about Long COVID and myalgic encephalomyelitis (ME), which is a complex, common, stigmatised, and deeply debilitating illness that is frequently triggered by COVID.

Like Long COVID, ME disproportionately impacts marginalised communities, including trans people, BIPOC, and those living with HIV. We call on the HIV community to stand alongside people with Long COVID and ME in fighting for a furutre free of post-viral illnesses.

...

... Going forward, those of us who choose to remain in the COVID-19 Working Group will use our membership in ACT UP NY to boost crowdfunding and mutual aid efforts, particularly for people with Long COVID and ME, and commit to challenging anti-Blackness and ableism in our organising spaces. Please reach out to this account if you have a medical or survival fundraiser you'd like us to boost.

https://twitter.com/user/status/1818116828658328022


https://twitter.com/user/status/1818116833611759680


https://twitter.com/user/status/1818116838863077733
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NEJM, 4/27/22: “Communicating COVID-19 Science” with Jeanne Marrazzo (now current NIAID Director)

JM: “..the things that I worry about with people who, even who are immunized, who get COVID are fatigue…significant fatigue…that really prevents them from getting back to work.”

“there's this long COVID kind of spectrum that I think we are just beginning to understand.. I mean, you may not cognitively and physically be feeling like you want to get back. And then there's, of course, the long COVID that we're just learning about. So will a short course of a small molecule, antiviral, really impact the likelihood that these things are going to happen less in people who are less at risk, quote unquote, for severe COVID? That is something that we absolutely have to figure out.

And getting back to Lindsey's comment, how do we design those prospective trials now? They're going to need to be observational trials. They're not going to be randomized control trials unless you start looking at longer courses or combination therapy. I don't think we're having those discussions in a way that is going to really get us the answers we need in the real time we need as variants are evolving on a daily basis. So it's an incredibly rich discussion.”

“Can you predict whether they're going to have long COVID or whether they're going to have fatigue? We've seen several young athletes who could not get back to the exertional capacity they had prior to COVID. Even in the absence of obvious radiologic or pulmonary function abnormalities, there's just something going on there that we don't understand."
 
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WXPR: "Long COVID patient's persistent struggles highlight urgent need for more research"

'Hanlon used to hold a managerial role at a Fortune 500 company in Minneapolis'

'In November, 2017, he was finally diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, as well as POTS, or Postural Orthostatic Tachycardia Syndrome.'

'When the pandemic first hit, he was volunteering at an advocacy organization called ME Action.'

“They sounded the alarm pretty quick, saying, if this is really a worldwide pandemic with a very infectious pathogen, there could be a wake of these post infectious illnesses that, unfortunately, are just very much abandoned by the medical silos,” he said.'

'After Hanlon’s second COVID-19 infection, his condition deteriorated further and he was diagnosed with long COVID.'

'As Director of Advocacy and Outreach for the Minnesota ME/CFS Alliance, Billy Hanlon advocates for long COVID, POTS, ME, and other conditions to get more funding for research.'

“We're fighting together for this common goal to just to liberate us all from these insidious diseases, and hopefully, we can get that secured funding that it will take for these breakthroughs, because it will take, you know, hard science that that is necessary to be able to make the advancements that can lead to intervention,” he said.

"In April, Senator Bernie Sanders introduced the Long COVID Moonshot Act, which would provide $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to respond to the Long COVID crisis with more urgency."

Hanlon hopes that the Act passes.
 
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I didn't bookmark any info but from what I gather today is the day that budget decisions about LC funding is being decided. There was a call for advocates to be present, send messages or phone. Not sure if anyone has more details.

Edit: found one.
It's 9:00am in Washington DC, and it's a beautiful day for Senators to receive calls from #LongCovid patients and allies asking for FY25 Appropriations! Let's light up their phones!
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https://twitter.com/user/status/1818632707964125332
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Includes a list of senators to call and the phone number to their office, as well as some instructions.
 
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7/25/24: 'Late Breaker: Long COVID Stories-Making the Case for a Whole-of-Society Response' by Allison O'Donnell, Deputy Director at HHS

Description: 'We all want to move on from the pandemic. Those with Long COVID and the people that care for them, can't. Long COVID can impact every aspect of life. Today we don't know what causes it, how to diagnose it, or how to treat it. This session will discuss how partnerships and a whole-of-society response can help those with Long COVID today.'
 
So some people may have noticed that the US Congress budget outline has been published by the US Senate. There is almost no mention of Long Covid or ME/CFS besides a few agencies being "urged to X" and so on. To massive disappointment.

And that's because it's a separate bill: The Long COVID Research Moonshot Act. It was made public today:
Today U.S. Senator Bernie Sanders @SenSanders formally introduced the Long COVID Research Moonshot Act. This marks a historic moment, the culmination of relentless effort and dedication from countless individuals. #LongCovidMoonshot
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https://twitter.com/user/status/1819449296552710523
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It's probably worth having its own thread, but this is very relevant to News from the USA.

In my opinion this is everything. All the relevant organizations, whatever they do, must put all efforts at making this pass. Everything else they do is not even secondary, it barely matters compared to this. This is easily 100x more budget than has ever been spent on real efforts, with some loose accounting for the fact that the initial RECOVER initiative has mostly wasted its funding with a false start, so it barely counts as far as I'm concerned. But at least it would mean that this money will be able to hit the ground running.

To recap how this works: the US has two equal branches of government (unlike most national legislatures, where the second is mostly symbolic). The general budget has been approved by the Senate's Health and Human Services committee and will need to pass the whole Senate, then the House, but it contains basically nothing, as far as I can tell only $13.5M for AHQR and some provisions urging ARPA-H, a cutting edge budget dedicated to medicine mirroring the technology-focused DARPA, which is under the defense department, to work at it.

This is a separate bill, and will need to pass the Senate, then the House, separate from the general budget. This can pass with a huge mobilization. But only then. If representatives feel little interest from their constituents, they won't care and will vote against it. Decades of advocacy and organizations working their asses off all come down to this. This is everything, no one else will do anything close to this scale.
 
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