Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught.
No matter how you say it, we got nothing.
Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s statement to NPR in November 2015 that NIH would “ramp this up.” Despite Dr. Vicky Whittemore’s estimate at the May 2016 CFS Advisory Committee that the RFAs would be issued by June or July 2016. Despite NIH’s public statement in the Federal Register in October 2016 that the RFAs would be published in December 2016.
We. Got. Nothing.
Specifically, NIH announced on the last business day of December 2016 that the RFAs are now expected to be published by the end of January 2017. NIH said that “due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements.”
Remarkably, Dr. Francis Collins even made a statement on Twitter:
Lots of interest in #MECFS research from NIH Institutes leads to 1 mo delay in FOA, no effect on research start date https://t.co/cOg37kYGYZ
— Dr. Monica M. Bertagnolli (@NIHDirector) December 30, 2016
This very public update on the status of the RFAs is clearly the result of activism. First, Terri Wilder/MEAction and I launched a public effort to urge Dr. Collins to keep his promise to the ME community. Then Janet Dafoe suggested that people with ME tweet Dr. Collins with their pictures and a statement that they are waiting for funding.
How about all #pwME tweet or send a photo of themselves to @NIHDirector with label "ME/CFS sufferer waiting for funding of research" & name.
— Janet Dafoe (@JanetDafoe) December 29, 2016
This filled Dr. Collins’s Twitter feed with dozens of pictures of severely ill people with ME, in a very moving wave of activism.
These public acts holding Dr. Collins accountable for his broken promise led to the statement on Friday about the delay. The reason, according to Dr. Collins and the public announcement, is that a high level of interest from the Institutes resulted in revisions and “finishing touches.”
These RFAs have been in progress since June 2016. In October 2016, NIH said they would be out in December. Was there an increase in the level of interest from the Institutes between October and December? More importantly, will this increased interest lead to increased funding? Dr. Whittemore told me by email in December that the money was committed, so that the continuing budget resolution would not impact the funding. If the money was committed by December, I don’t think it’s likely there was a last minute surge of interest and funding.
NIH has moved the goal posts again, this time to the end of January 2017. A reasonable person might think that this public statement of the new deadline would ensure that NIH meets it. But that reasonable person should take into account the previous public statements by Dr. Collins and by NIH in the Federal Register. NIH has not come through on previous self-imposed deadlines. It remains to be seen if this time it will be different.
Jennie
It’s outrageous, of course, that you and other activists have to go to these lengths to get the most senior US public health officials to, quite simply, keep their word.
What is clear, is that you do not allow their failure to keep their word to pass unnoticed, that you see their obfuscations for what they are and that without your efforts it’s even more uncertain when or even if funding would be allocated!
We need to plan now what we will do if the funding we do get is too little. What will we do if the funding is only increased to 15 million?
The word is that it’s only going to be increased to $15 million so start planning now!
I know that that is the rumored amount regarding what we will get, which is why I made my comment. How utterly pathetic to only give ME patients crumbs like $15 million, after decades of waiting for some semblance of help from our government. $15 million is tantamount to the continuation of the government neglect we have witness for the last 30 years. It had better be substantially more.
Thanks for the update.
I wish it had gone quicker; that would have sure saved some anxiety. But in the grand scheme of things does it really matter that the RFA’s have been delayed by another month?
Things take longer than expected – sometimes a lot longer apparently. Particularly with an effort like this – which Vickie has never done before. The important thing for is that the funding has been established and that more money is coming and it’s apparently this month.
(Unless Collins actually made a promise that the increased funding would occur by a certain time (he said Koroshetz was moving on it) I’m not sure that he’s broken his promise to significantly increase funding. ???)
In any case, I expect that this time the NIH will come through.
I think it’s inaccurate to say that Dr. Collins has broken his promise. Did he have a promise to increase funding for ME/CFS by a certain date? (Not to my recollection) He promised to significantly increase funding and it looks like he’s going to do that.
Of course it makes a difference that it is six months later or one month later. We are holding on to hope that help will come our way, but just barely holding on. Suicides happen when there is little or no hope. We have had too many suicides in our community these past few years.
A delay of months (since June), and now another delay of a month, on top of the decades of lack of appropriate funding for this disease is very meaningful in the grand scheme of things. It reinforces the belief that government agencies don’t take ME seriously and don’t understand the urgency patients feel.
It’s all very well and good that you Cort are willing to wait, again and again, year after year, and be mollified over and over by HHS agencies about the wait, lack of appropriate funding, etc. but
most of us have other things we would rather be doing than waiting.
Of course it matters especially when it is disingenuous. Collins can pick up the phone and change research funding for ME in one second. He knows full well that 15 million to solve a disease as complex as ME is a joke. There si no plan or urgency. Just more talk and crumbs.
Keep up the pressure.
But I’m terrified by what is going to happen on the 20th of JANUARY, right before the END of January, that is going to make all bets suspect.
When I took my second job, I made SURE that on the 19th of January I started my new job, because on the 20th Reagan was being inaugurated – and had made all kinds of promises about changing things (the job was at Princeton, supported by the Department of Energy).
I hope that debacle doesn’t affect our funding, but is it even realistic to think it wouldn’t?
Which is why I’m terrified – all progress could be suddenly thrown out the window, regardless of the good intentions of anyone involved (if there ARE good intentions – not apparent).
Isn’t it striking that the new deadline falls after Trump takes office? A cynic might wonder if the civil servants (i.e. our overlords) at the NIH are just waiting and hoping for the Trump administration to appoint someone else head of the NIH. Then Collins’s promises go away and they can go back to what they want to be doing.
The head of NIH has to be confirmed by the Senate. Those confirmations take time so it is unlikely that would affect the RFAs.
I’m not an attorney, but to me Collins has made what I would consider to be Promises! Below are two such examples from 2015, over a year ago (and there are at least two other articles where he made similar statements)!
An article from Science Mag:
NIH refocuses research into chronic fatigue syndrome
By Jon Cohen Oct. 29, 2015
Excerpts from article:
NIH currently spends only $5 million on the disease…….
“I’ve been troubled about the lack of answers we have for this condition since I became NIH director,” says Collins, who took the job in 2009…….
Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a chance to prove we’re serious, because we are,” Collins says.
http://www.sciencemag.org/news/2015/10/nih-refocuses-research-chronic-fatigue-syndrome
An article from NPR:
Chronic Fatigue Syndrome Research Gains Funding, And Controversy
November 4, 2015
MIRIAM E. TUCKER
Excerpts from article:
Patients have long criticized the NIH for what they see as extreme underfunding of research into the illness, with the annual amount hovering around $5 million or $6 million for the past several years.
That’s about to change, according to Dr. Francis Collins, director of the NIH. “It will be substantially greater than the current five or six million a year,” he said in an interview with Shots. “We are going to ramp this up.”
Collins said he’s ambitiously aiming for money to be disbursed in 2016.
http://www.npr.org/sections/health-shots/2015/11/04/454335755/chronic-fatigue-syndrome-research-gains-funding-and-controversy
“a high level of interest from the Institutes resulted in revisions and “finishing touches.””
is bureaucrat-speak for “this is a hot potato no one wants to touch.”
We are talking about a 30 BILLION dollar a year organization whose primary purpose is to disburse money to researchers, yet they claim to be so incompetent at issuing requests for proposals that they can not figure out how long it takes for a process they do every day.
Don’t believe it for a minute. Someone at NIH is seriously dragging the anchor – we need to know who. This would be a good time for a whistle-blower to step forward.
Thank you, Jennie, for all the excellent advocacy you do and for always keeping us updated. I don’t know if you know how appreciated your work is, and by how many.
Like jimells, I didn’t like the sound of “a high level of interest from the Institutes resulted in revisions and “finishing touches”. To me it sounded like bureaucrat-speak for “we’re having trouble getting the institutes onboard”.
And what we need is not only RFAs for structure, such as COEs (which is very important and I hope the funding will be decent) – we also need RFAs with money for actual research.
While the NIH and the CDC and others – and of course their equivalents in other countries – drag their feet, our lives are passing by.
Thank you, Jennie, for your hard work advocating, explaining, writing, etc.
Oh, brother, more beaucratspeak. I will only believe the funding when I see it. “Show me the money” is right.
I have been ill for 31 years and have been waiting for that period of time for the federal government to take this disease seriously with funding and research.
There is no more time for procrastinating. It’s time for the NIH to act, actually decades past time.
People’s lives are passing by. I’d like some healthy years where I can do some things I’d like to do, like go to a movie, concert, play, even travel to another borough in my city. I’d like to clean my apartment, cook nice meals, invite friends over, go for long walks. Etc., etc.
Everyone knows we have to keep the NIH’s feet to the fire. Everyone here does the best they can. We all have to keep on keeping on.