NIH issued only two RFAs last week, but last week we learned much more about what is coming for ME/CFS.
As I explained in my summary of the CFS Advisory Committee, Dr. Vicky Whittemore reported that she will be presenting a “funding concept” for an RFA to the Council of the National Institute of Neurological Diseases and Stroke on May 26th. If the Council approves her concept, she then will have to seek approval from any other participating Institutes. Once approval from all the funding sources is secured, she (or the Trans-NIH ME/CFS Working Group) will write the RFA. If all goes well, Dr. Whittemore estimated that the RFA would be issued in June or July. Applications would be due in the fall, and funding would begin next year.
In light of NIH policies, Dr. Whittemore could not provide any information about the RFA’s target or budget. We will have to wait for the official announcement. She also seemed to indicate that there could be more than one RFA, although over what time frame is completely unknown. And while Dr. Whittemore seemed confident about the likelihood of the RFA this summer, it should be noted that nothing is guaranteed. The NINDS Council could refuse it, or request modifications. Other participating Institutes (as yet unnamed) may decline as well. And until we can read the RFA, we cannot judge if the concept or amount of funding is sufficient.
I return again to Carol Head’s comments at the CFSAC meeting: “Time is running out to believe in federal changes for funding.” This is the week of the #MillionsMissing protests. I will be missing from my local protest because of this damn disease. I am missing (and have missed) so much of my life. And until there is an actual RFA in my actual hands that actually provides adequate funding for ME/CFS research, I will continue to say there are #MillionsMissing in research dollars.
It’s a very simple equation, really. We are running out of time. And so is NIH.
- Total RFAs Issued by NIH: 223 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,036,840,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 5/16/16 | 2 | $7,800,000 | Zero |
| 5/9/16 | 11 | $32,100,000 | Zero |
| 5/2/16 | 8 | $32,485,000 | Zero |
| 4/25/16 | 4 | $7,500,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/11/16 | 4 | $6,825,000 | Zero |
| 4/4/16 | 8 | $27,000,000 | Zero |
| 3/28/16 | 13 | $161,000,000 | Zero |
| 3/21/16 | 1 | $2,700,000 | Zero |
| 3/14/16 | 5 | $23,650,000 | Zero |
| 3/7/16 | 9 | $82,710,000 | Zero |
| 2/29/16 | 1 | $1,890,000 | Zero |
| 2/22/16 | 9 | $30,100,000 | Zero |
| 2/15/16 | 4 | $26,500,000 | Zero |
| 2/8/16 | 5 | $9,500,000 | Zero |
| 2/1/16 | 8 | $26,000,000 | Zero |
| 1/25/16 | 4 | $9,300,000 | Zero |
| 1/18/16 | 2 | $4,500,000 | Zero |
| 1/11/16 | 10 | $71,200,000 | Zero |
| 1/4/16 | 0 | $0 | Zero |
| 12/28/15 | 0 | $0 | Zero |
| 12/21/15 | 3 | $10,260,000 | Zero |
| 12/18/15 | 5 | $20,260,000 | Zero |
| 12/11/15 | 27 | $765,090,000 | Zero |
| 12/4/15 | 6 | $26,600,000 | Zero |
| 11/27/15 | 4 | $21,000,000 | Zero |
| 11/20/15 | 15 | $134,400,000 | Zero |
| 11/13/15 | 2 | $16,100,000 | Zero |
| 11/6/15 | 10 | $22,850,000 | Zero |
| 10/30/15 | 7 | $49,800,000 | Zero |
| 10/23/15 | 10 | $33,200,000 | Zero |
| 10/16/15 | 0 | $0 | Zero |
| 10/9/15 | 13 | $332,450,000 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
“I am missing (and have missed) so much of my life.”
Too true! And too true for so many of us!
“And until there is an actual RFA in my actual hands that actually provides adequate funding for ME/CFS research, I will continue to say there are #MillionsMissing in research dollars.”
Until we see that/those RFA(s), I will be saying the same thing…..
A person grows old waiting for NIH to do their job. I was sixteen when this started. I’m 52 now.
Cue the spinners, “But these things take time…you have to learn to be patient…a huge research effort doesn’t happen overnight.”
Indeed, we are running out of time.
Patience? I think we all have a lot of it, an unbelievable amount of it.
Many of us have waited for decades for proper governmental attention to
the plague of ME/CFS.
I am very concerned about potential NIH funding to research this disease’s
causes, biomarkers and possible treatments.
There is a looming Zika crisis. The White House asked for $1.9 billion to
deal with it. The House only agreed to one-third of this amount, but wants
funds taken from other health programs to meet that allotment.
The NIH just took funds from its malaria, TB and influenza programs to
finance research for a Zika vaccine and the CDC just moved $44 million from
its public health emergency grants to states to fight Zik.
So, I’m not sure that our disease will be funded at this time of scrambling
for funds for Zika, which is seen as a public health emergency.
And, yes, missing out on life. True. My life is often reading, watching
TV and dvd’s. I can’t even travel around my city, just stay close to
home. Can’t figure out how to do medical and dental appointments,
especially since I can’t sleep half the time.
Dr Nath, the NIH researcher responsible for the proposed NIH Clinical Center study, is heavily involved with the Zika response, but we are supposed to believe that he will still have time for our illness, even as the Zika hysteria become louder every day.
Last year it was the Ebola crisis. Next year there will be a different crisis. The disability insurers have a death grip on M.E. research policy. Until their stranglehold on policy is broken, there will always be a new crisis more important than our own.
They need to cut the “Fatigue” BS. This is a crime against humanity. My whole body may not have run out of time yet; but every moment pieces of me have.
I shouldn’t have to be sick from thinking thoughts and saying them out loud or putting them on paper. I shouldn’t be sick from trying to understand and read and remember my own thoughts/words. I shouldn’t have to rest afterwards flat on my bed with my eyes closed. It shouldn’t make me sick for days; causing migraines and vertigo and a constellation of symptoms.
This is the richest country on Earth and people are being persecuted and left to suffer and die for not having a more popular disease. We desperately need medical care NOW.
From P2P page 13:
Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting.
How many people have been helped and how many lives have been saved by the work of Ron Davis? How can they just watch Ron’s son Whitney; bedridden and dying; imprisoned in his own body and in solitary confinement in his room and not fund research for the most severe patients? How can they just watch us all suffer and some of us die and continue to deny us? Research into this disease will help 17 million people world-wide. They need to act appropriately now.
I got sick at age 17; when I had mono and a severe strep throat at the same time. I’m 50 and bedridden now. It’s been 33 years of lies, lack of appropriate medical care, lack of understanding and persecution that I’ve endured. When this happens in a household it’s considered neglect and domestic violence and it’s criminal. Why is it accepted when doctors and governments do it?
I sent shoes I couldn’t afford to buy to the #MillionsMissing protest and this message:
I am missing branches I’ll never create in my family tree and I am missing faith in the consciousness and conscientiousness of people.
Oh Laurie, such powerful words. I sent my favorite pair of work pumps to the demonstration. We are missing so much, it can never be counted in full.
It’s awful how much life is being missed.
I’ve just curtailed what my concept is of “life.” It’s a much narrower definition and has gotten narrowed over the years. Sometimes going to the library two blocks away is my outing for the day or going to the corner for snacks — yes, chocolate, etc., a comfort food.
Or watching a dvd is the highlight of the day.
I agree that it is more than appalling that any health care professional could
read about and see photos of Whitney Dafoe, Ron Davis’ son, and not rush
to do something about his condition immediately. It is an emergency and
the bureaucrats in D.C. and public health experts, scientists and doctors,
with a few exceptions, don’t seem to care.
I agree with Jenny and some others.
People have waited to long. Many living death, others come up for air just to see how the world and life is passing all of us who are sick
Fatigue is being used more and more since the IOM and P2P meetings. IOM very strong saying “drop CFS and fatigue…”
I wish dr. Whitemore’s well, however the patient population is polluted with people who have other serious diseases.
Many dying after decades of struggle.
I will not believe a thing from HHS and all the Gov’t agencies under it, CDC, NIH,niaid, and now NIMH .
Only when acknowledge publicly to all how abusive the healthcare system has been to those who are sick. And there is mandatory education in all areas of medicine regarding people who are sick, isolated and dying.
In memory of friend advocate…Pat Blankenshio, may she rest in peace.
Meghan