Francis Collins steps down from the NIH

[Diwi9]

@Diwi9, is ME/CFS not housed in the NINDS, or am I off-base in this?

My understanding is that neither of those institutes house ME/CFS. At one time we were attached to some office related to women's affairs. We are not formally in NINDS, but Vicky Whitemore overseas our small grant portfolio and she is housed with NINDS.

 

[Dakota15]

https://www.science.org/content/article/nih-refocuses-research-chronic-fatigue-syndrome

I guess I'm confused given how this article from 2015 tried to explain things:

"NIH has not committed new funding to ME/CFS research, but its Clinical Center plans to launch a study of people shortly after they develop related symptoms from a probable but as yet unidentified infection. (Symptoms of the disease range from neurological and cognitive problems to immune and sleep abnormalities.) NIH also is moving oversight of ME/CFS research from the Office of Research on Women's Health to the National Institute of Neurological Disorders and Stroke (NINDS)."

"Disease advocate Robert Miller, whom Collins called this morning before making the announcement, applauds both the decision and the patient population for its effective lobbying. "For the patient population this is huge," says Miller, a former coal miner who lives in Reno, Nevada, and developed the disease in 1982 after a bout with the flu. "One of the really key things is that we're basically being moved out of Siberia," says Miller, referring to the shift from the poorly funded women's health branch to NINDS."

 

[Pyrrhus]

This is why all the folks from that era of the NIH need to be moved aside for us to move forward.

Francis Collins was not part of that era. He was just a geneticist-scientist in his own little lab at the time.

Most of the people from that era have moved on just due to age, although their biases linger on with their remaining colleagues. (And a certain someone who was responsible for improperly diverting money remains on the editorial board of a certain virology journal...)

@Diwi9, is ME/CFS not housed in the NINDS, or am I off-base in this?

Yes, Collins directed that all agencies within NIH prepare a plan to house ME/CFS, and announced that ME/CFS would rotate among all agencies, beginning with NINDS, where it still resides - at least for now.

 

[Diwi9]

Yes, Collins directed that all agencies within NIH prepare a plan to house ME/CFS, and announced that ME/CFS would rotate among all agencies, beginning with NINDS, where it still resides - at least for now.

. So as an orphan illness, we are basically in foster care! Thanks for the background on that. I forgot some of those details.

I believe the funding for our Centers of Excellence came by way of contributions from multiple institutes (?). FWIW - It looks like NINDS 2021 budget is over $2 billion. ME/CFS is projected to receive $16 million next year. But, Jenny Spotila did a budgetary analysis of 2020 reported spending and found funny accounting practices. Of note, we later learned from Dr. Nath that they ceased the intramural study in 2020, which I suspect makes their accounting even less honest in hindsight. http://occupyme.net/2021/08/09/the-2020-nih-funding-fact-check/

 

[Pyrrhus]

I believe the funding for our Centers of Excellence came by way of contributions from multiple institutes (?).

I remember something like that, but the details elude me.

By the way, the Centers of Excellence funding is set to expire next year, but I wouldn't be surprised if all of that relatively small amount of money has already been spent.

Of note, we later learned from Dr. Nath that they ceased the intramural study in 2020

With disappointing (non-)results. Although Avi Nath was working in good faith, the intramural study was operating on a shoe-string budget and was, at first, improperly staffed. The future of this effort is murky and uncertain...

 

[YippeeKi YOW !!]

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.

'Moribund' means a person or living entity (like a tree or flower or fish) LITERALLY at the point of death .... and while you can take artistic license and use it any way you want to (a usage that's become popular in recent years, in the wake of the decline of Oxford's Rules of English Usage) , my profound love of, and respect for, the English language compelled me ....

EDIT ... for two embarrassing typos ...

 

[YippeeKi YOW !!]

By the way, the Centers of Excellence funding is set to expire next year, but I wouldn't be surprised if all of that relatively small amount of money has already been spent.

Absolutely. There have to be numerous members in all those committees who must be in need of a new Mercedes and another vacation home ...

Sorry. My opinion of the whole lot is decidedly jaundiced and dark ....

 

[Pyrrhus]

By the way, the Centers of Excellence funding is set to expire next year,

It looks like they will be renewed for another 5 years. Phew.

https://twitter.com/i/web/status/1451626279741046785