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.
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.
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 Agenda: https://osp.od.nih.gov/wp-content/uploads/2024/07/ENGAGE_Listening_Session_Agenda_7.17.2024.pdf
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.
Yes. For me. at least, it could not be much worse. As with the NIH Eefrt bizarre weirdness, you have to ask, "Why"?
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...'
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.”
