Francis Collins steps down from the NIH

Pyrrhus

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U.S. National Institutes of Health Director Francis Collins is stepping down as head of the NIH.

He was one of the very few ME supporters that we had inside the NIH.
He had great plans for ME research but encountered fierce resistance from inside the NIH.
He had also been heavily criticized by patients for not achieving sufficient funding for ME research.

 

Alvin2

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He was one of the very few ME supporters that we had inside the NIH.
I'm not sure i buy this.
I always suspected he was buttering our bread, pretending to care about ME/CFS then claiming he could not do anything.
Not that i can prove that, but trust is earned and he didn't earn it, he just gave us soundbites and a few crumbs.
 

Pyrrhus

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I did not know that. Do we know which key NIH staff were leading this resistance to expanding ME research?
Apparently the resistance came from all angles.
Walter Koroshetz of NINDS was at first resistant, but has become more understanding.
Anthony Fauci of NIAID, on the other hand, was surprisingly supportive of Collins's efforts.

I always suspected he was buttering our bread, pretending to care about ME/CFS then claiming he could not do anything.
The claim that he could not do anything is credible.

Congress micromanages the NIH budget to such an extent that there is little wiggle room left over, even for the director of the NIH himself.
 

Alvin2

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Apparently the resistance came from all angles.
Walter Koroshetz of NINDS was at first resistant, but has become more understanding.
Anthony Fauci of NIAID, on the other hand, was surprisingly supportive of Collins's efforts.
Yet Fauci was not willing to go to bat for us, his response is that long covid discoveries will also treat ME.

The claim that he could not do anything is credible.

Congress micromanages the NIH budget to such an extent that there is little wiggle room left over, even for the director of the NIH himself.
And the money that was allocated in the 90s and beyond that was misspent?
 
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I would hesitate to canonize Collins. His grandiose plans for ME included a cursory, forty person study which has since been suspended. Said study’s director, Brian Wallitt, considered ME a psychogenic illness. One of the scientists involved in that study was Freddie Gill, a mentee of Steve Straus, who enthusiastically trumpeted the PACE trial.

I’ve heard from a respectable and trusted source that Walt Koroshetz, Director of NINDS, quipped that Long Covid will allow NIH to abandon their paltry ME investigation as the former is indistinguishable from the latter.

Moreover, Fauci vehemently opposed ME patients in their righteous crusade against Straus. Fauci implored Congress to extinguish constituent complaints against Straus. Fauci also felt flummoxed by the ME community’s aversion to the purported psychiatric nature of the disease, as mental illness had become more societally palatable.

Government funds meant for ME exploration were shamelessly pilfered. Accountability was nonexistent.

I hate to appear so moribund, but NIH will never serve as the epicenter of progress for our disease. The institutional inertia is suffocating, and the specter of Straus looms large in those vaunted halls (they still display his portrait prominently).[/QUOTE]
 

Diwi9

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Collins gave lip service. The institutes at the NIH have incredible funding power, including discretionary funding. Those directors just did not see any political benefit in using "their" discretionary funds to address such a maligned illness that has no dedicated funding because it lacks an institutional home at the NIH. I see serious problems with the structure of the NIH and how illnesses that receive funding capture the agency's/institutes' priorities.
 

Alvin2

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congress decides what illnesses get funding not the docs. it's why lots of people have been meeting with congressmen and women to try and get funding and backing. it's a complicated issue.
While mostly true they do have discretion and giving away money that was given to us is arguably a crime against humanity.
 

Diwi9

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congress decides what illnesses get funding not the docs. it's why lots of people have been meeting with congressmen and women to try and get funding and backing. it's a complicated issue.
That's not how the NIH works...only when Congress directly funds specific illnesses, otherwise the funding provided to the NIH is left to their bureaucratic system to determine how grants are funded through their internal procedures. Our advocacy groups keep trying to get Congress to fund ME/CFS so the NIH cannot sidestep it as they have been. When Congress directed $13 million for ME/CFS research, Strauss and company reallocated some of the funds, which was illegal. This is why all the folks from that era of the NIH need to be moved aside for us to move forward.
 

Diwi9

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I feel like I need to explain further. ME/CFS is an orphan illness. We are not housed in any institute within the NIH. Each institute is like a state and each state has a director. Those directors act as advocates for the diseases that fall within their institute. Because ME/CFS has remained an orphan illness, no institute at the NIH advocates for us to increase their budget...therefore, each time we ask for funding, we are pulling funding from their constituent illnesses or certain political interests that a director wants to use their discretionary funding to align with. This is a status game in how bureaucracies operate, it's not about how disparate our funding is in comparison to disease burden BECAUSE no agency benefits financially or in clout for funding us. Until we have an institutional home, we are rudderless within the system.
 
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Because ME/CFS has remained an orphan illness,
Would "fixing the code" start to address this? (as a starting point)....

no institute at the NIH advocates for us to increase their budget.
This might be the case for other floundering illnesses- what controls this "policy"? Is it their regulations?

How might "this" get changed? What about an institute for: the orphaned illnesses....?

How did NIH address Gulf War Syndrome I wonder?


oh I have so many questions, this just must get fixed.
 

Diwi9

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Would "fixing the code" start to address this? (as a starting point)....



This might be the case for other floundering illnesses- what controls this "policy"? Is it their regulations?

How might "this" get changed? What about an institute for: the orphaned illnesses....?

How did NIH address Gulf War Syndrome I wonder?


oh I have so many questions, this just must get fixed.
Gulf War Syndrome is funded through Congressional funding through the DOD. This is why Klimas has said multiple times that is has been easier to access GWS funding. There is no institute for orphan illnesses and I can't imagine institutional motivation for such funding. What we need is unequivocal evidence to house us in NIAID or NINDS...both have been avoiding this and Collins didn't force it one way or another. Now we have Covid-19 and there is a billion dollars of funds and the institutes are jockying to claim it. I'm tired of advocates for ME/CFS tip-toeing around the institutional factors that leave ME/CFS out. Yes, we need to lobby Congress for funding, but we need to lobby to finally find a home for ME/CFS and go from there. Make ME/CFS someone's responsibility.
 
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Second star to the right ...
congress decides what illnesses get funding not the docs. it's why lots of people have been meeting with congressmen and women to try and get funding and backing. it's a complicated issue.
That's not really accurate, much as I dislike Congress' inability to get anything useful done, ever. While they can make suggestions, they can't issue dictates.

Almost all of NIH's gov't funding is provided in the annual Departments of Labor, Health and Human Services, and Education, and Related Agencies budgets.

Generally, about 65% of all the biomedical research and development funding comes from within the medical industry itself, with only a little more than 20% coming from the gov't ...
 
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Second star to the right ...
Because ME/CFS has remained an orphan illness, no institute at the NIH advocates for us to increase their budget.
You're absolutely right.

The only hope we have is that multiple tens of millions of COVID survivors develop severe long-haul, and I wouldnt wish that on anyone, nor do I think that will happen.

Congressional committees generally run on the goodwill of others, and as you pointed out, there just isnt enough 'goodwill' to accrue from supporting ME/CFS research ....
we need to lobby to finally find a home for ME/CFS and go from there. Make ME/CFS someone's responsibility.
Again, I totally agree.

Here's a listing of the NIH's current areas of interest, and thus, research dollars. And even a cursory glance makes it pretty clear that their raison d'etre is to clamor for funding while producing little of any value from it ... but that's just my jaundiced, cynical view ....

  • Nat’l Cancer Institute
  • Nat’l Eye Institute
  • Nat’l Heart, Lung, and Blood Institute
  • Nat’l Human Genome Research Institute
  • Nat’l Institute on Aging
  • Nat’l Institute of Alcohol Abuse and Alcoholism
  • Nat’l Institute of Allergy and Infectious Diseases
  • Nat’l Institute of Athritis and Musculoskeletal and Skin Diseases
  • Nat’l Institute of Biomedical Imaging and Bioengineering
  • The Eunice Kenndy Chriver National Institute of Child Health and Human Development
  • Nat’l Institute on Deafness and Other Commuication Disorders
  • Nat’l Institute of Dental an Craniofacial Research
  • Nat’l Institute of Diabetes and Digestive and Kidney Diseases
  • Nat’l Institute pn Drug Abuse
  • Nat’l Institute of Enviromental Health Sciences
  • Nat’l Institute of Gen’l Medical Sciences
  • Nat’l Institute of Mental Health
  • Nat’l Institute on Minority Health and Health Disparities
  • Nat’l Institute of Neorological Disorders and Stroke
  • Nat’l Institute of Nursing Research
  • National Library of Medicine

 
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Do you mean morbid?


Cause if you're moribund, you have way bigger problems than the NIH ....
I’m cognizant of the differences between the two terms, and sadly, “moribund” properly encapsulates my outlook on personally improving from ME, the state of governmental research, and the trajectory of public opinion regarding this, and related, illnesses.