Yeah, they didn't used to have a pay-wall. Much of the site was free, with just some part of STAT+. Now it seems like you get 3 free articles a month, and that's it.
It's a really good article, thanks, @dave30th. As a pwME I'm kind of sad you didn't include ME/CFS in any way, but I guess you wanted to keep it strictly to LC and FND.
Yeah, I understand that. Unfortunately, it got trimmed--or rather, I trimmed it, upon request--to about half the original length. The first version was wordy, wonky and hard to read--too loaded with data and complicated explanations. It was hard to figure out what exactly to leave in and out. These things always end up in some sort of negotiations with editors. You try to sneak things back in, they say X or Y needs to be rephrased or dropped or whatever. The piece references "post-acute infection syndromes"--so I considered that includes infection-associated ME/CFS cases. But given the length constraints, it seemed best to keep the focus tight on the immediate issue of concern, given that the FND folks are really trying to expand their domain with dizziness and cognitive stuff related to Long Covid. I tend to view articles like this as planks--a base for further writing on related aspects.
Understood. I look forward to future articles. I get the part about keeping it tightly focused - better for clearly conveying the central message.
Something like that. I mean, clearly the same critique would apply to Dx-ing ME/CFS patients as having FND, even if not said explicitly.
Ever since Elon Musk took over twitter, looking at the replies of any political tweet is just bullying and far-right conspiracy theories.
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.
This is extremely true. But also, this replies end up influencing public sentiment. Long term I’m planning on completely leaving twitter but I’m finding it really hard to get a similar reach on Bluesky or Mastodon.
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)"
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)
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.
Broadly speaking, yes, and - on paper at least - for longer. These (TBDs and ME/CFS) are in large part diseases whose narrative is politically derived and maintained
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.
