So. Is anyone surprised that it is January 9th and we do not have the promised RFAs? I didn’t think so. Will we hear an announcement at the CFS Advisory Committee meeting this week? I don’t know.
The question that I pose to all of you is: are you ok with this? Are you satisfied with how this is unfolding? Is NIH working quickly enough for you?
No? Then I suggest you do something about it. Because if you are not happy with this, you shouldn’t just cross your fingers and hope this all works out.
Here are the current cumulative RFA numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 121 | 352 |
| Dollars Committed | $680,707,563 | $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 |
|---|---|---|---|
| 1/2/17 | 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.
You have just inspired me to write Dr. Collins my second email within a month. Thanks for keeping us all in the loop, Jennie.
Yeah!!! Thanks for emailing Dr. Collins, and thanks for letting me know!
Here, here!
Hey, hey!
NIH end the delay!
Here, here!
Hey, hey!
Release our RFAs today!
(my original email to NIH said “We want…” but I prefer “Release…”)
Awesome!
I’ve written 3 brief emails in the last month. One when Whitney got an infection in his PICC line. One when you and ME Action called on all activists to action. The last one, unfortunately, was when I learned of the tragic and untimely death of ME patient John Knight, who was the third member of his family to die from ME.
I don’t want to write too many and have my emails blocked. Is that a consideration? Do you know if they’ll block patients that they get too many emails from? Thank you.
That’s a really good question. I don’t know for sure. However, my gut reaction is that they are obligated to receive all emails from the public. They may not read them, and obviously there would be a different procedure for harassing emails, but I don’t think they can just block an individual.
Digging down into the RFA’s a little bit might uncover one reason why this on is taking so long; – it’s actually for rare for the NIH to an RFA on a single disease. Of the 28 RFA’s listed for Dec 16th, only 3 listed a single disease (two on one type of cancer, 1 on diabetes) – https://list.nih.gov/cgi-bin/wa.exe?A2=ind1612&L=nihtoc-l&F=&S=&P=521.
Four of the 14 focused on a single disease on Dec 9th, 1/10 on Dec 2nd, 14 on Nov 2nd, 1/10 on Nov 18th, 0/6 (2 on kidney transplantation). After looking over them I would bet that 30% are on diabetes as well – the NDDK seems to favor single disease RFA’s – and HIV is another common one.
I went through a couple of months of these and didn’t see any RFA’s on multiple sclerosis, rheumatoid arthritis, COPD, osteoarthritis, gut disorders, eye disorders, etc.
The point is that Vicky Whittemore may be doing something that NIH doesn’t do very much – produce an RFA are on a single disease. Most are on broader topics.
I disagree. I have looked at every single RFA since I started this project in October 2015. There are plenty of RFAs on single diseases or specific aspects of diseases. There are also plenty of RFAs on infrastructure projects like the Consortium.
The only complication in our RFAs is that so many Institutes are supposedly participating. Again, this happens a lot. I do not believe that this justifies the delay we are seeing in this case.
The survey I did of a couple of months found them pretty rare. I was going to do a blog on them about a year ago and found the same thing. (A short look suggested that ROI’s – the type of RFA we had before – are even rarer.)
It would be interesting to learn how many infrastructure RFA’s have been published on a single disease. That would probably give us the best benchmark.
I’m not saying that they don’t happen or that it shouldn’t have happened earlier, but I don’t see any evidence that the NIH with it’s 200 plus list of conditions and diseases is pounding out these types of RFA’s.
Here’s from May, June, July
17 Single disease RFA’s produced – 7 of which were on diabetes or HIV and three on Alzheimer’s.
RFA’s on Single Disease
0/3 RFA’s
2/10 – Autism
0/3
4/5! – Alzheimer’s, Diabetes, Asthma, Asthma
June
3rd – 0/4
10th – 2/5 – HIV
17th – 2/4 – Diabetes, Parkinson’s
24th – 1/1 – HIV
May
6th – 0/9
13th – 5/9 – Shock/Alzheimer’s/Alzheimer’s/Alcohol Research/ Alcohol Research
20th – 0/2
27th 0 3/9 – HIV/ HIV/Diabetes
This is all irrelevant. This is a health crisis. They have promised and they are taking too long. People are suffering. I’m sick of bureaucratic bs excuses. We are Amerucans who pay taxes. We are being ignored. No more excuses.
THIS. SO MUCH THIS.
(except you could have ended with *mic drop*)
Yes! This is a health crisis. This is a disability crisis. This is a poverty crisis. This is a homelessness crisis. This is a crisis for the 85-90% who are undiagnosed. This is a crisis for all of us who are marginalized, disbelieved and slandered, suffering alone and some of us dying. No more excuses.
I agree that it’s taking a long time – too long but I don’t want to disparage or diminish the efforts of Vickie Whittemore and others either. Whether they’ve intended it or not, they RFA posts make it seem as if the NIH regularly hands out hundreds of thousands of dollars for RFA’s like the ones we’re asking for. I don’t think that’s true
Take a look at the diseases the single RFA’s have been produced for in the six months or so that I examined and then look at the kind of funding they get.
Diabetes – $1 billion dollars
HIV/AIDS – $3 billion dollars
Parkinson’s – $152 million dollars
Autism – $289 million
Asthma – $216 million
Alzheimer’s – $910 million
These are obviously very big ticket items at the NIH. That suggests it USUALLY takes diseases with a lot of clout to get RFA’s for them alone – like we’re trying to do.
Judging from this list it looks like an RFA for a disease like ME/CFS is unusual. I don’t know why that is. I don’t think it used to be that way but that’s appears to be the way it is now.
There’s no doubt that ME/CFS is in a crisis situation and it has been for a long time, and it’s frustrating to see this drag on and on. It’s never irrelevant, though, to try and understand what’s going on. At the very least we can get an appreciation of what Vickie Whittemore is trying to accomplish.
Hopefully the RFA’s will be out very soon. 🙂
Cort, I could go back through the hundreds of RFAs I’ve looked at in the last 15 months to find examples but I don’t have the time. There are RFAs as small as $500k and as big as tens of millions. There are single disease, multi disease, infrastructure, and single question within a single disease RFAs. There are single Institute, multi Institute, and Common Fund RFAs. There are single year and multi year RFAs. NIH regularly hands out RFAs like all of these examples to the tune of BILLIONS of dollars in aggregate.
Your argument boils down to “we’re getting something unusual” and “this is hard to do.” Both arguments are specious. It was NIH who decided these would be infrastructure grants funded by multiple Institutes for ME/CFS. The work has been (presumably) going on since May 2016. And it was NIH that said in October 2016 that we should expect those RFAs in December 2016.
So either NIH has been completely clueless in predicting it would take six months to do something so unusual and so hard, OR Vicky Whittemore has run into bureaucratic red tape that required a public statement from Dr. Collins to cut through, and (in theory) issue the RFAs by the end of January 2017. I don’t know whose fault it is, and I don’t care. Dr. Collins has not yet ensured that his agency has followed through on the public statements he’s been making since October 2015.
I started this RFA Ticker after I heard through the grapevine that NIH just doesn’t issue RFAs that often. 473 RFAs and $3.5 billion later, it is abundantly clear that this is not the case.
We don’t really have any idea why this is taking so long. It could be because some of the Institutes are balking; it could be because it really is an unusual effort; it could be because the Cancer Institute finally came on board, wanted some changes and everyone else had to sign on; it could be because one Institutes representative got sick over the holidays! We really don’t know at all.
Having the expectation that the NIH will do things in a timely manner is probably only going to be frustrating. The fact that single disease RFA’s appear to be unusual could help explain that.
The important for me is that the NIH has stated that the funding is there and the RFA is going through. We’ve waited for an RFA, after all, for over ten years.. Whether it’s tomorrow or next week or the week after that, as frustrating as the wait is, will ultimately be of less consequence than the fact that one is coming, and that research centers are going to be funded.
Cort – perhaps you have the patience of a “saint”.
Or perhaps you are willing to give federal agencies A LOT of slack because they are “a big deal” and you are in awe of them.
Or….
As for me and my family – we have lost too many years of life, productivity, experiences, and health to this wretched disease.
For far too many decades the world has missed out on what patients would have contributed – if they had had the health to do so.
ENOUGH with tolerating excuses!
ENOUGH with “maybe it’s because of X, Y or X” that we haven’t had the funding we deserve!
We deserve better treatment than this from federal agencies!
We have waited more than long enough!
I don’t have the patience of a saint. What I have is the NIH’s word – coming from Vickie Whittemore I suppose – that the funding is a done deal, that the money is there, and that its taking longer than expected to wrap things up.
Once I heard that my fears were basically resolved and I was able to relax.
I expect the NIH to keep their promise to increase ME/CFS funding. If they don’t that’s another matter entirely.
(And no I am not in awe of the NIH (lol).)
I deeply appreciate Vicky Whittemore’s efforts. But I repeat: This is all irrelevant! They can manage money for other health crises. I don’t care what their bureaucratic issues and systems are. That’s for them to figure out. They need to respond to a severe health crisis affecting millions of US citizens, and, while these citizens suffer and die, while I watch my son lying there YEAR AFTER YEAR, in pain, unable to talk or eat or communicate or barely move, crying and begging for his dad to figure out how to help him, these PUBLIC SERVANTS are hemming and hawing for months and months, years, trying to figure out how to fund it. I do not feel that it’s our job to figure out their bureaucracy. That’s THEIR job. And they need to DO IT! I’m not interested in excuses any more!
Janet Dafoe. Amen.
Jennie. Yes, girl.
Ditto, Amen, Thanks, and mic drop to you, Jennie! – to you, Janet Dafoe – to you, Terri Wilder!
As Janet said, “I’m not interested in excuses any more!”
Enough. Is. Enough.
Many of us have been ill/housebound/bedridden for decades. If the government had acted responsibly decades ago, patients like Whitney (and so many others) would probably have treatment. There is NO more time to waste.
Ditto to what Janet Defoe said here twice.
It’s not our job to be understanding of every single possible obstacle impeding the NIH from funding research for ME/CFS. It isn’t.
When the NIH thinks a disease should be funded, it does it. When Ebola was a life-or-death emergency and Congress wouldn’t come through, the CDC and NIH found some funds and reallocated them. When HIV/AIDS was a similar crisis, after a movement pushed very hard, suddenly funds were found to do the research.
It isn’t our job to figure out NIH’s rationale and to look at the history of RFA’s in detail, even though we appreciate Jennie’s doing this.
We are sick people who cannot live our lives and are restricted from doing so due to this illness. I’ve waited for the NIH to do something for 31 years. I’m through.
NIH has to fund this disease and direct monies to researchers who will do the work needed — and NOW! Not in six months. Not in a year. No one should have to suffer any longer.
And, frankly, I’m for jamming Dr. Collins’ office with phone calls, too, not just emails. When there are email political campaigns, people are urged to phone, too. Phones are still in use everywhere; they are not obsolete.
I disagree with this:
It’s not our job to be understanding of every single possible obstacle impeding the NIH from funding research for ME/CFS. It isn’t.
Actually as patient advocates I assert it very much is our job to try to understand the obstacles facing us at the NIH and in Congress n order to learn how to overcome them. It’s our job to be work as skillfully as possible in those very competitive environments. That’s how things get done.
We came very close to losing the CDC funding for our disease because we weren’t on top of it.
That’s why disease groups regularly hire lobbyists to assist them. That’s why the SMCI’s hire of Emily as advocate in chief for the organization is so important for our illness. We need to know what battles to fight and how to fight them and what battles to walk away from. We need to know how to use our own limited resources best.
I asked Ron about this. He said that he does not believe that NIH funds single diseases less, or at least that is not a policy; that is not the issue. NIH issues RFAs in areas they think there is a need that isn’t being addressed. If there are already a lot of grant applications in an important area, they don’t issue RFAs for that. They look at where there is unaddressed need and issue RFAs to encourage research in that area. That is how it worked when Ron was on Council. And, he said, “If ever there was a need, it is ME/CFS! For at least 30 years.”
He also told me that he has never been told that the money is there. Quite the contrary. He’s been told that they are trying to get monetary commitments from the different institutes, and set up the RFAs and that it’s hard for all the institutes to finalize the thing. One institute will make a change and then it has to go back again to all the others to get their approval. This is taking a long time. Too long.
Yes, Vickie Whittemore is a great ally and advocate. But she is not in charge. She’s doing what she can to make it happen. She is not the problem.
We believe they are taking way too long. I’m not relaxing till we see the money! (And Ron won’t relax then. He’ll be submitting his proposal/grant application and continuing his research as fast as he can with whatever he has!)
I’m sure Ron is right but the evidence suggests that NIH has a lot of trouble using RFA’s to fund disease needs for other than very large diseases.
The only RFA’s I could find were for diseases that have hundreds of millions of dollars of funding ALREADY devoted to them. I’m sure diabetes has it’s needs but it’s already getting over $1 BILLION in funding this year. Does HIV/AIDS with its $3 BILLION in funding (which is getting really have more special needs than other diseases?
In fact one could make the argument that the RFA’s are NOT based on need. That only diseases with a lot of clout can get single issue RFA’s funded
If RFA’s were based on special needs then migraine – one of the top ten illness burden producing diseases – would be getting lots of RFA’s. So would ME/CFS. Something else is going on, and honestly it would be good to figure out that is.
Nor does it change the fact that the NIH is funding very few single disease RFA’s anymore. I found, what 17 instances or so, of RFA’s published for single diseases over approximately 6 months. That’s not very many. We can ignore that fact or we can plug it into our own knowledge base of how the NIH functions.
Jennie was told by Vickie that the money had been committed and was there. That’s what I’m going on.
“Dr. Whittemore told me by email in December that the money was committed, so that the continuing budget resolution would not impact the funding.”
Cort – I find it very troublesome that you believe Jennie when she relays something from an email with Dr. Whittemore,
but you don’t believe Jennie when she corrects you about the RFAs.
Your quick perusal of a smattering of RFAs doesn’t come close to the detailed examination evident in the RFA Ticker.
Jennie has recently spent far more time and energy looking into RFAs than anyone else (I know of) in the community – and the RFA Ticker is much more than just a tally each week of what NIH releases. (In it she includes examples, comparisons, related news, etc.)
“Something else is going on, and honestly it would be good to figure out that is.”
Yup. It is the policy of non-research, implemented to protect the profits of disability insurers. Late advocate Tom Hennessey explains it in this interview:
http://phoenixrising.me/interviews-3/10317-2
Ten years ago the UK Parliament Group on Scientific Research into ME (The Gibson Inquiry) [1] called for an investigation into the connections between the insurers, psychobabblers, and government agencies:
“CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies.”
“[There are] numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.” [2]
Obviously we still need a real investigation, and it needs to include US agencies and insurers as well as UK agencies and insurers.
[1] http://erythos.com/gibsonenquiry/Report.html
[2] https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political
I want to clarify my use of the word “understanding.” It has a few meanings. Yes, we have to be understanding of what’s going on at NIH, meaning to comprehend it.
But no, we don’t have to be understanding about it, meaning sympathetic.
I meant the latter meaning in my comment, not the former.
Anyway, are folks going to watch the CFSAC conference Thursday and Friday?
The NIH has a very simple job: write checks to researchers who are desperate to cash them. With thirty thousand million dollars to play with, every year, it should be easy to be a hero to patients who would eagerly kiss their feet for a few crumbs.
For thirty years they have failed to do their job, but we are told to be patient for just a few more years – the same tired refrain black people have been hearing since the end of slavery 150 years ago.
Instead of heroes, they are lying scumbags who don’t give a damn how many lives are ruined:
“The recommendation to invite Dr. Shorter to speak at the NIH last month was made by Dr. Brian Walitt of the NINR. The recommendation was approved by Dr. Avindra Nath, the Director of Clinical Research at the National Institute of Neurological Disorders and Stroke Division of Intramural Research.”
from Communications Department at the National Institute of Nursing Research
http://mecfsfromme.blogspot.com/2017/01/walitt-invited-shorter-and-nath.html
Any other identifiable group that has been subjected to systematic discrimination by a government agency for three decades would be pursuing their tormentors in court and in the streets. Instead, ME patients prefer to wait politely in near silence, hoping that some day NIH leadership will take pity on us and throw a few half-chewed bones our way.
Actions speak louder than words…..Wallit? Shorter? The design of the inhouse research project….Why are we pretending there might be something coming along in the future? Or that Collins assurances bear any relation to his intentions….get real, guys. A lie is a lie is a lie.
“Why are we pretending there might be something coming along in the future?”
For most people, it is too painful to admit, even to themselves, how easily they were taken in by NIH hustlers. When that is added to the desperate need for patients to have something to hang their hopes on, it becomes very easy for skilled professional manipulators to keep patients in line.
If NIH and CDC leadership were half as skilled at research as they are at lies, manipulation, and public relations, we would’ve had real treatments a few decades ago.