frozenborderline
Senior Member
- Messages
- 4,405
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
NIH misallocating funds and moving slow on Long covid research
- Thread starter frozenborderline
- Start date
frozenborderline
Senior Member
- Messages
- 4,405
"WASHINGTON — The National Institutes of Health is fumbling its first efforts to study long Covid.
Fifteen months ago, Congress showered the agency with a massive $1.2 billion to research the mysterious cases of patients who never fully recover from Covid-19 infections. But so far the NIH has brought in just 3% of the patients it plans to recruit.
Critics charge that the NIH’s missteps are even bigger: that it is acting without urgency, that it is taking on vague, open-ended research questions rather than testing out therapies or treatments, and that it is not being fully transparent with patient advocates and researchers.
This study “is a slow-moving glacier,” said Lauren Stiles, a former long Covid patient and a research assistant professor of neurology at the State University of New York at Stony Brook.“With a half-billion dollars, they could have run multiple clinical trials.”
Even the NIH admits the pace has been dissatisfying.
“I mean, everybody is frustrated about how slow things are,” said Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke and a co-chair of the initiative, in an interview with STAT. He added, however, that while starting enrollment “took way too much time,” the NIH stood up the study “much faster than we’ve done anything else before,” pointing out the agency’s usual pace can be even slower.
Related:
NIH’s identity crisis: The pandemic and the search for a new leader leave the agency at a crossroads
And then there is the matter of the money — more than $1 billion of which was temporarily transferred out of NIH to help pay for the health department’s efforts to house unaccompanied children at the U.S. border with Mexico. (NIH, which quietly disclosed the transfer in an FAQ section on the study’s website, contends the transfer didn’t slow the research down at all.)
The success of the NIH’s research into long Covid will shape the trajectory of the long-term burden of the pandemic on health care systems around the world for years to come, as millions of patients grapple with debilitating symptoms. If researchers can find answers, it also could provide a once-in-a-lifetime chance to give hope to a host of patients with other post-viral illnesses that have been long misunderstood.
But the NIH will have to walk the fine line between responsibly designing large-scale research to provide the clearest answers, and making sure the effort doesn’t buckle under the weight of bureaucracy.
“The potential is huge. With that kind of investment, if the money is used wisely, it could be a huge leap in knowledge of post-viral disease,” said a long Covid researcher who spoke anonymously to avoid jeopardizing grants from the NIH. “That was the plan, and I hope it’s still going to be possible.”
Fifteen months ago, Congress showered the agency with a massive $1.2 billion to research the mysterious cases of patients who never fully recover from Covid-19 infections. But so far the NIH has brought in just 3% of the patients it plans to recruit.
Critics charge that the NIH’s missteps are even bigger: that it is acting without urgency, that it is taking on vague, open-ended research questions rather than testing out therapies or treatments, and that it is not being fully transparent with patient advocates and researchers.
This study “is a slow-moving glacier,” said Lauren Stiles, a former long Covid patient and a research assistant professor of neurology at the State University of New York at Stony Brook.“With a half-billion dollars, they could have run multiple clinical trials.”
Even the NIH admits the pace has been dissatisfying.
“I mean, everybody is frustrated about how slow things are,” said Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke and a co-chair of the initiative, in an interview with STAT. He added, however, that while starting enrollment “took way too much time,” the NIH stood up the study “much faster than we’ve done anything else before,” pointing out the agency’s usual pace can be even slower.
Related:
NIH’s identity crisis: The pandemic and the search for a new leader leave the agency at a crossroads
And then there is the matter of the money — more than $1 billion of which was temporarily transferred out of NIH to help pay for the health department’s efforts to house unaccompanied children at the U.S. border with Mexico. (NIH, which quietly disclosed the transfer in an FAQ section on the study’s website, contends the transfer didn’t slow the research down at all.)
The success of the NIH’s research into long Covid will shape the trajectory of the long-term burden of the pandemic on health care systems around the world for years to come, as millions of patients grapple with debilitating symptoms. If researchers can find answers, it also could provide a once-in-a-lifetime chance to give hope to a host of patients with other post-viral illnesses that have been long misunderstood.
But the NIH will have to walk the fine line between responsibly designing large-scale research to provide the clearest answers, and making sure the effort doesn’t buckle under the weight of bureaucracy.
“The potential is huge. With that kind of investment, if the money is used wisely, it could be a huge leap in knowledge of post-viral disease,” said a long Covid researcher who spoke anonymously to avoid jeopardizing grants from the NIH. “That was the plan, and I hope it’s still going to be possible.”
BrightCandle
Senior Member
- Messages
- 1,152
I was reading the other day of the 20 major breakthroughs on Long Covid (largely replication of ME/CFS breakthroughs but done without that knowledge) 19 of them were not from NIH funding. The NIH is no where in Long Covid research at all. In the RECOVER programme I was looking through its goals and it is quite simply the most expensive bio bank/symptom study ever done. The goal seems to get blood from every single long covid patient and document their symptoms, there is nothing in there for doing novel research that I could find whatsoever. We already know the NIH is refusing to fund Ron Davis' work and they are doing the same to other ME and Long hauler researchers. To me so far it looks like a gigantic misappropriation of funds to clinics where they can do nothing for the patients than document what they say is wrong with them and confirm their blood appears normal on standard tests.
frozenborderline
Senior Member
- Messages
- 4,405
This is making me feel hopeless. The time when long covid got allocated th3 initial huge 1.15 billion dollars was thr only tims In this illness I've felt hope
frozenborderline
Senior Member
- Messages
- 4,405
Yes it's good other researchers are doing breakthroughs but we need the NIh almost no major disease has been solved without initial PUBLIC funding for the long and unprofitable phenotyping and genotyping and figuring out tbe etiology. Bc pharma companies only make profit once the etiology is illuminated and they have clear targets for drug trials. That's not the case for me/cfs or long covid.
So in my opinion we need to somehow hold their feet to th3 fire and force tbem to spend this money. congress already allocated it which is a rare victory. Now th3y can't use the excuse of not being in charge of their budget whereas congress is . We can't Afford to say "whatever, screw them, other researchers will do the work anyway". As much as I hate koroshetz we need the NIH.
We Need to fix this
Replicating basic research is actually valuable tho. The problem is they only use a fraction of tthe budget and aren't transparent .. they spent some of th3 funds on housing migrants. But doing basic large scale studies is not inherently a problem. The Prooblem is there's this huge pile of money and theyre barely using it. Replication is important and ther3 aren't many large scale high quality studies in this field .
Pyrrhus
Senior Member
- Messages
- 4,172
- Location
- U.S., Earth
Thanks for posting this excellent STAT article!
Related discussion:
NIH RECOVER study for Long COVID
https://forums.phoenixrising.me/threads/nih-recover-study-for-long-covid.86332/
Related discussion:
NIH RECOVER study for Long COVID
https://forums.phoenixrising.me/threads/nih-recover-study-for-long-covid.86332/
frozenborderline
Senior Member
- Messages
- 4,405
By the way I also have an audio version of this article that I had someone read for a podcast. I have a couple articles like this and I realized they might be helpful for people with eye issues or trouble reading with this disease. Hmu if anybody wants the audio version.
frozenborderline
Senior Member
- Messages
- 4,405
Also this podcast covers some of this ground.
frozenborderline
Senior Member
- Messages
- 4,405
Hey guys, this most recent podcast covers a lot of this stuff , from how the recently higher prevalence of me/cfs thanks to the pandemic could be an opportunity, to the specific problems discussed in that statnews article, to some of the most recent research opportunities.