Second verse same as the first. The wait continues.
Two dates are coming:
- January 31st, by which Dr. Francis Collins said the RFAs would be issued.
- February 1st, on which NIH will hold another ME/CFS advocacy call. Call-in information has not yet been posted.
Will the audience demand an encore?
Here are the current cumulative RFA numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 123 | 352 |
| Dollars Committed | $726,307,563 | $2,840,680,617 |
| RFAs for ME/CFS | ZERO | ZERO |
And here is the table for FY 2017 alone:
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 1/16/17 | 2 | $45,600,000 | Zero |
| 1/9/17 | 0 | 0 | Zero |
| 1/2/17 | 1 | $43,000,000 | Zero |
| 12/26/16 | 0 | 0 | Zero |
| 12/19/16 | 2 | $10,000,000 | Zero |
| 12/12/16 | 28 | $125,950,000 | Zero |
| 12/5/16 | 14 | $114,800,000 | Zero |
| 11/28/16 | 10 | $47,660,000 | Zero |
| 11/21/16 | 6 | $42,780,000 | Zero |
| 11/14/16 | 6 | $44,350,000 | Zero |
| 11/7/16 | 10 | $25,490,563 | Zero |
| 10/31/16 | 4 | $26,550,000 | Zero |
| 10/24/16 | 10 | $53,400,000 | Zero |
| 10/17/16 | 17 | $94,890,000 | Zero |
| 10/10/16 | 1 | $28,750,00 | Zero |
| 10/3/16 | 9 | $23,087,00 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
Oh where, oh where are our RFAs?
Oh where, oh where can they be?
With the funding still short,
and us waiting so long,
Oh where, oh where can they be?
I wonder what kind of explanation we will be given if the RFAs don’t appear by the end of January? One thing that struck me looking around the NIH web site the other day – some institute directors have been in their positions a very long time. Dr Fauci has been director of NIAID since 1984. How many other civil servants have kept their positions and power over such a long period of time? We assume that the head of the NIH has a great deal of power to shape the response of the NIH to ME/CFS. What if the people who really call the shots at the NIH are the institute directors? Here is a thought experiment: suppose Dr Fauci and Dr Collins had a serious disagreement as to which future strategy to pursue? Whose opinion would most likely prevail?
Yes, it’s amazing just how opaque these agencies are, in spite of the “democracy” label and incessant “We The People” propaganda.
You wrote:
“suppose Dr Fauci and Dr Collins had a serious disagreement as to which future strategy to pursue? Whose opinion would most likely prevail?”
Fauci would prevail. Everyone in these bureaucracies understands that the political appointees at the top are short-timers, while Fauci has been there forever, and by now many employees owe him for their posts.
Fauci has long been an opponent of ME research. As discussed below, the “CFS” research program was moved from NIAID to the Office of NIH Director in Oct 1999:
“Dr. Anthony Fauci, NIAID Director, met with Dr. Harold Varmus, Director of NIH, and concluded that CFS was more complex and activities should be relocated from a single NIH institute.” (CFSAC minutes Sept 2003)
Although it may be unintentional, the above wording is very interesting and seems to suggest that Fauci made the conclusion, not Varmus.
As far as I can tell, the “CFS” program still resides at the NIH Office of Research on Women’s Health, in spite of confused rumors that it would be moved back to an institute.
Presumably Fauci knows how to deal with controversy and is a skilled bureaucratic infighter. He was a main target of ACTUP in their campaign to get research money for AIDS, but apparently failed to learn that patients can not be ignored forever, ’cause, you know, we’re not going away until we die or treatments are made available.
There is an interesting article in The Washington Post:
At NIH, one woman says gender bias has blocked promotions
Aug. 28, 2016
By Lenny Bernstein
I can’t remember and write. I’m at the read it several times over two days and cut and paste level, so here are some quotes from that article:
“Bielekova, who has filed an Equal Employment Opportunity complaint against her institute’s director and two others, said women’s lagging prospects at NIH reflect gender bias, overt and unconscious, from the men who run the institution. She is supported by a body of research that leaves little doubt that bias is at least part of the problem.”
““It’s not negligence,” Bielekova said in a rare public discussion of tenure deliberations. “Women are considered second-rate citizens. They are fully aware that this is happening, the leadership. It’s happening with their blessing.””
“The drain of talent deprives research of the perspective women can bring and could hold back scientific progress, according to a panel of the National Academy of Sciences, which in 2007 reported on women in academic science and engineering.”
“While tenure awards are supposed to be based largely on merit, it is widely acknowledged that personality conflicts, budget constraints, internal politics and other factors affect them.”
““It is not lack of talent, but unintentional biases and outmoded institutional structures that are hindering the access and advancement of women,” the NAS panel wrote.”
“Specifically, Bielekova alleges retaliation and discrimination based on gender after what she describes as a “power struggle” following the retirement of her mentor, who was chief of the neuro-immunology branch. She said male scientists were provided numerous advantages in the aftermath and that she has been harmed by groundless accusations from male colleagues of unprofessional conduct. A male colleague from her branch, she said, was nominated for tenure at the same time that she was held back.”
“Koroshetz said he cannot discuss individual cases but makes his tenure decisions based on the institute’s overall programmatic needs, not gender. He said he has not seen gender bias but knows that women consider NIH a more difficult place to work than men do.”
Francis Collins is now a proven liar so don’t believe a word he says. It seems to me that after his big, exciting “announcement” in October 2015 that the NIH is giving CFS nothing but lip service as it has for the past 20+ years. Nothing new, same ol’ same ol’. This basically verifies that they still don’t consider CFS a legitimate disease despite all their talk. So why do they lie to advocates? I’m guessing so advocates get off their back. Delay and deflect while doing nothing.
Maybe it would be better for the new administration to flush all these liars and bureaucrats and bring in some new blood.
Yes, I think they say what they think they have to say to delay and deflect when dealing with people who are ill or other advocates. Stalling tactics. Bureaucrats know how to do it.
We will see what happens on Jan. 31.
It’s so frustrating having this disease because we are limited in what we can do.
I would not count on the “administration” to do anything. Right now, they’re dismembering the Affordable Care Act. Millions will lose care and coverage. So, do they care about people who are sick? Nope. I’m just waiting for them to try to damage Medicare; 55 millions people are insured in its program and 70 million have Medicaid. I don’t think that this grouping cares one iota if people lose medical care.
So I’d put no hope in them. They want to slash funding for government programs.
RFAs have been released:
http://forums.phoenixrising.me/index.php?threads/nih-rfa-announcements-and-feb-1-nih-teleconference.48968/
Thank you for providing the links.
Barely enough to get started – but better than nothing.
Scroll down to Section II: Award Information to see the numbers. Jennie gets to put them up – she does all the work, IMHO.