News from the USA, United States of America

Dakota15 said:
That advocacy team worked pretty strategically and diligently to attain those funding increases (from $39M in FY21 to now $125M in FY25), just surprised that's not seen as a (somewhat?) victory in the IACCI space as opposed to jumping at the chance to minimize / wearing the critique hat.
Click to expand...
That’s crazy. Thats like if by 2028 the NIH allocates 80 million to ME (in terms of precentage increase over 4 years). That would be a massige deal.

Obviously if it isn’t well spent it would not lead to much immediately, but thats probably a doubling or even tripling of the global yearly research funding.
 
Last edited:
It's especially impressive in a current climate that's clamping down on or flat-lining health research spending in the US over the last two fiscal year health bills.

Their advocacy is paying off in a profound way, reflected in these increases.
 
Last edited:
Yann04 said:
Thats like if by 2029 the NIH allocates 80 million to ME (in terms of precentage increase over 4 years). That would be a massige deal.
Click to expand...

Dakota15 said:
They are an outlier, and their advocacy is paying off in a profound way, reflected in these increases.
Click to expand...
Yes. Agreed.

But it's complicated by issues you don't necessarily see in ME/CFS (just as ME is beset by things you don't see in Lymeworld).

One example is diagnostics. Let's say you dedicate all that $25 million to erecting a diagnostics' platform that actually identifies directly whether you have Bb. That sounds reasonable and smart considering much of the controversy surrounding Lyme is whether people who think they have it actually do. What you'd have to deal with - that you don't in ME/CFS - is the battle with vested concerns in positions of influence who already hold patents. This includes several agencies from governmental to academic. Many believe these agencies have collectively, and negatively, impacted potentially the emergence of direct testing.

Aim that $25 million at a new diagnostics metric, some believe it would get swallowed up by the Bayh-Dole Act alone.

So, the increase is a step in the right direction, but steerage must be considered.
 
(quickly sharing for tomorrow)

"The NIH Office of Science Policy will host a listening session on strategies for engaging the public as partners in clinical research. July 17 1:00 – 2:30 p.m. ET."

You can register below, and can provide public comments.

https://partnersinresearch.nih.gov/...9wP0pnvjpEcsLJXEKY_aem_GcYGOxSMcIoA7agjv6NxaQ

GSnnKjQXAAEBIfF


Agenda: https://osp.od.nih.gov/wp-content/uploads/2024/07/ENGAGE_Listening_Session_Agenda_7.17.2024.pdf
 
Last edited:
Dakota15 said:
That advocacy team worked pretty strategically and diligently to attain those funding increases (from $39M in FY21 to now $125M in FY25), just surprised that's not seen as a (somewhat?) victory in the IACCI space as opposed to jumping at the chance to minimize / wearing the critique hat.
Click to expand...
Let's go with "Long Lyme" for convenience. The history of Long Lyme seems like the very worst of the history of ME/CFS, concentrated with even more hate and disgust. I think in part because of how uncomfortable some of the BS about how "if we only knew which pathogen caused this, we would have researched this for reals, pinky promise" and then they literally did none of that. No one likes to be revealed as liars, especially liars.

It's as bad as us overall, but it gets many MDs foaming at the mouth in outrage at the mere mention of it, compared to the "ME? what's that?". I guess they just have that extra bit of cynicism and simply expect that it will be mostly sabotaged. Kind of with the money in the Netherlands that was supposed to exclude psychosomatic BS and ended up being largely given to the most prominent psychosomatizers around.

I think it's healthy to be this cynical after seeing all this betrayal and bad faith. It's not as if it will change much about how it's used, or misused.

And frankly I'm at this point. Any money allocated for research on either ME or LC gets nothing but eyerolls from me unless it's going to some of the tiny few researchers with real motivation and ambition, knowing that almost none of it will actually be productive, and that it will be used as some sort of gotcha, as if failing on purpose proves anything other than bad faith intentions.

It's still better than nothing, because the potential of them accidentally doing something useful for once is always there, but after so many false hopes, you just stop trying to kick the football, knowing that Lucy will always yank it anyway.
 
rvallee said:
Let's go with "Long Lyme" for convenience. The history of Long Lyme seems like the very worst of the history of ME/CFS, concentrated with even more hate and disgust. I think in part because of how uncomfortable some of the BS about how "if we only knew which pathogen caused this, we would have researched this for reals, pinky promise" and then they literally did none of that. No one likes to be revealed as liars, especially liars.

It's as bad as us overall, but it gets many MDs foaming at the mouth in outrage at the mere mention of it, compared to the "ME? what's that?". I guess they just have that extra bit of cynicism and simply expect that it will be mostly sabotaged. Kind of with the money in the Netherlands that was supposed to exclude psychosomatic BS and ended up being largely given to the most prominent psychosomatizers around.

I think it's healthy to be this cynical after seeing all this betrayal and bad faith. It's not as if it will change much about how it's used, or misused.

And frankly I'm at this point. Any money allocated for research on either ME or LC gets nothing but eyerolls from me unless it's going to some of the tiny few researchers with real motivation and ambition, knowing that almost none of it will actually be productive, and that it will be used as some sort of gotcha, as if failing on purpose proves anything other than bad faith intentions.

It's still better than nothing, because the potential of them accidentally doing something useful for once is always there, but after so many false hopes, you just stop trying to kick the football, knowing that Lucy will always yank it anyway.
Click to expand...
Yes.

For me. at least, it could not be much worse. As with the NIH Eefrt bizarre weirdness, you have to ask, "Why"?
 
Last edited:
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...'
 
Last edited:
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.”
 
(50 min interview with Bateman)

“Emerge Australia Podcast Series, 2/22/24: ‘Ep. 20 – Dr Lucinda Bateman’

“I think things are moving forward and faster than ever before, but it takes time and it takes a critical mass of people engaged, but I do believe we're making progress”

‘We have a long way to go in understanding the core treatments..but the entire COVID pandemic has opened up a whole new avenue..new level of interest from clinicians & scientists..”

“I have a strong belief in the hypothesis that there's a role played by viruses and maybe other infections and the presence of that DNA or RNA and also the potential for reactivation”

“And then there's a tight connection with some kind of a chronic immune and inflammatory process that may feed back and forth. I also feel fairly confident that this illness affects the central and peripheral nervous system and the interplay with circulation and the delivery of everything in the blood to critical organs. And I think one of the most important areas to me is trying to understand why cellular energy production is abnormal.”

“And so there's now interest all over the world in trying to understand what's going on in long COVID patients. And what we've done in the ME/CFS world is try to keep ME/CFS in the conversation. Always, always, always in the conversation with long COVID and what can we learn and how do we benefit both groups and how do we use what we learn in either field to make it better for everyone.”

“So RECOVER..there's a clinical trials arm of trying to design treatments and test them..And so there have been people with experience in ME/CFS kind of as part of the planning of all of these, trying to be that voice that brings up the relationship between the illnesses. But for example, the whole first protocol for looking at long COVID patients didn't ask appropriately about post-exertional malaise, because people didn't believe it. It's just the people planning the protocol were like non-believers.

But they've had to go back and revise it because of the large number of patients who report post-exertional malaise. And the same with the clinical trials. They started out really with very little understanding of exercise intolerance and post-exertional malaise and the manifestations. And then we've had an opportunity to really educate those planning, those clinical trials for long COVID, what we've learned from ME/CFS and about pacing and about a post-exertional malaise”

“I would say the most interesting and important area, pivotal area is understanding the energy problems in the cell. And what's creating what appears to be mitochondrial dysfunction. To me, that is going to be pivotal in us being able to move forward and design treatments, and also look back to understand how the immune system is contributing, how the virus is contributing.”

“But what's going on, right? That cellular energy is low & that patients just are unable to do very much without becoming very ill. To me, that is going to be the most important area that I'm kind of keeping my eye on, especially as that's coming up in long COVID research as well
 
Last edited:
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
 
Last edited:
(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.”
 
Last edited:
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
Click to expand...
 
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."
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom