News from the USA, United States of America

Yann04 said:
Ever since Elon Musk took over twitter, looking at the replies of any political tweet is just bullying and far-right conspiracy theories.
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Yeah, it doesn't seem to matter which political party, most of the top replies are hate. Someone looking at the replies does not get anything like an accurate representation of public sentiment.
 
Washington Post: "About 7 percent of U.S. adults have had long covid, report says"

'About 7% of U.S. adults — nearly 18 million people — had suffered from long covid as of early last year, according to a recent report in JAMA Data Brief'

'Long covid can include a wide range of symptoms — including fatigue, brain fog, post-exertional malaise, coughing, fever and difficulty breathing. The CDC also notes that there isn’t a laboratory test that can definitively diagnose if symptoms are caused by long covid.'
 
Sharing from the US House of Representatives, House of Energy and Commerce Committee (E&C)

“On June 6, House E&C Committee Members Larry Bucshon, MD (R-IN), Vice Chair of the Subcommittee on Health and Diana DeGette (D-CO), Ranking Member of the Subcommittee on Energy, Climate, & Grid Security, released a request for input on a new iteration of the landmark, bipartisan 21st Century Cures Act."

"We are pleased to report that several original objectives of Cures 2.0 are already in motion..these advancements include:

“Policies to address Long COVID in the National COVID-19 Preparedness Plan and the establishment of the Office of Long COVID Research and Practice (OLC) to enhance our understanding and management of the long-term effects of the virus.”

"While it is encouraging to see these policies taking shape, we are mindful that these are just the initial steps towards our broader objectives. To ensure we are moving in the right direction and fully realizing the goals of the 21st Century Cures Act and Cures 2.0, we seek your input on key questions:

1. Do the policies included in Cures 2.0 that have advanced through legislation or executive action meet the needs that the original Cures 2.0 bill aimed to address?
2. What elements might be missing that are essential for further progress?
3. What additional reforms, support mechanisms, or incentives are needed to enhance or improve the effectiveness of the steps already taken, including any structural reform to agencies, offices, or programs involved?

Please send your input and feedback to cures.rfi@mail.house.gov by close of business on August 2, 2024."
 
From Center of Lyme Action yesterday

"Thank you to all the Lyme Advocates for your consistent efforts to grow federal funding for Lyme and tickborne conditions! Last week the House Appropriations Committee approved the FY25 Department of Labor, Health and Human Services Appropriations (L-HHS) bill and provided descriptions of programs with significant new report language. While the overall FY25 bill is $8.6B lower than FY24, our Lyme and tickborne disease (TBD) funding levels continue to grow. In a year of overall lower funding, this is a big win.

Specifically, the House Appropriations Committee approved an increase of $25 million for Lyme and TBD research setting a minimum spend of $125M in FY25. Here’s the summary of the Committee approved funding:
  • $125M – NIH NIAID Lyme and Tickborne disease research (+$25M)
  • $27M - CDC Lyme Disease Funding (+$0M)
  • $5M – HHS LymeX (+$0M)"
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Dakota15 said:
Specifically, the House Appropriations Committee approved an increase of $25 million for Lyme and TBD research setting a minimum spend of $125M in FY25.
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Meh.

$25 million for "Lyme", defined and characterized by whom, spearheaded by whom? Spent by whom?

As for $125 for tick-borne diseases, sounds alright until you realize how many TBD's there are - and how prevalent some have become. Babesiosis alone could use that amount.

I suppose it represents an improvement.

Who governs this needs to matter.
 
Respectfully, given the budget constraints for health spending in the FY24 and FY25 Health Bills, that increase is seen as a pretty big deal here / signal (if you are a US resident and have a different perspective, feel free to challenge this as I'm curious on your rationale)
 
Dakota15 said:
Respectfully, given the budget constraints for health spending in the FY24 and FY25 Health Bills, that increase is seen as a pretty big deal here / signal (if you are a US resident and have a different perspective, feel free to challenge this as I'm curious on your rationale)
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Allocating more money in theory is a positive. Respectfully, throwing that increase at more or less the same groups who have failed patients for almost a half a century doesn't strike me as "a pretty big deal" anywhere.

If a few million more $'s were allocated for ME research and given to the same NIH crew that just generated the effort preference nonsense, would you consider that a pretty big deal?
 
Does Lyme have those same challenges (have they been throwing money at the wrong groups)? Asking as I'm still learning the Lyme - IACCI space

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.

But yes, I also wholeheartedly agree that how it’s spent and who is governing is of vital importance to the impact of these increased funds.
 
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Dakota15 said:
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, but you do you.
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I'm all for getting more money in an area that is seriously underfunded, and I applaud such efforts, especially successful ones. That being said, depending where that money goes, it could be little more than Groundhog Day.
 
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.
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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.
 
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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.
 
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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.
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Dakota15 said:
They are an outlier, and their advocacy is paying off in a profound way, reflected in these increases.
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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
 
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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.
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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.
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Yes.

For me. at least, it could not be much worse. As with the NIH Eefrt bizarre weirdness, you have to ask, "Why"?
 
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