It got a bit crazy with NIH last week, didn’t it? The talk by Dr. Shorter went ahead as scheduled on November 9th, much to the chagrin of the entire patient community. Afterwards, NIH issued a follow up response which concluded:
The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.
Most people, myself included, did not interpret the statement as an apology.
In funding news, it was reported that:
Vicky Whittemore, the agency’s CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.
We don’t know if that $7.5 million predicted increase will come from the new RFAs or if it will include individual investigator funding as well.
Finally, Dr. Koroshetz tweeted:
NIH is committed to understanding the biology of ME/CFS. Success depends on partnership with patient community. https://t.co/P1RP9yS9dT
— Walter J. Koroshetz (@NINDSdirector) November 11, 2016
Many, but certainly not all, of the responses he received were critical of NIH’s commitment thus far.
I decided to take Dr. Koroshetz at his word. I tweeted:
This patient is READY. Call me. https://t.co/Ea09MenS0s
— Jennie Spotila (@knittahknits) November 12, 2016
I am ready and waiting.
Here are the current cumulative numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 51 | 352 |
| Dollars Committed | $252,167,563 | $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 |
|---|---|---|---|
| 11/17/16 | 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.
“It is fair to say it will have no impact…”
So it was a complete waste of researcher’s time and my money. Can I have a refund, Dr Collins?
“Success depends on partnership with patient community.”
That sounds like a threat to me: “If patients don’t act like a partner then we’ll take our marbles and go home.”
Hi Jennie! Since Trump’s election, I’m even more pessimistic that significant monies will be allocated to help us with this disease. I do want to mention that since I’ve begun my own investigation of this disease. I’m struck by the number of sufferers, such as myself, who know the exact date that the disease struck them even if it occurred years ago. I believe this is evidence that the disease has a more biological cause than psychological. Do you? Jennie, I applaud you and your efforts long and loudly! You’re a special person! Thank you so much!
Hi Ron! We face a lot of uncertainty, especially until a new HHS Secretary and possibly new NIH Director are confirmed. I do know the exact date I got sick, as I had a sudden infectious onset. This is not true for every patient, however. It is just one among many pieces of evidence pointing to a biological instead of psychological cause.
Ron,
The hope I can offer with a Trump election is that Trumpite Newt Gingrich will likely play a large advisory role in his administration, and Newt has called for a DOUBLING of the NIH budget. He believes that the NIH budget is a drop in the bucket compared to Medicare / Medicaid costs, so throwing more resources into NIH to help solve diseases would be a huge boon to overall health cost savings.
Thank you very much Jennie for keeping us up to date!
I hope the new figure of $15 million is over and above the RFAs. Hope springs infernal!
This new amount is obviously paltry compared to the impact, and numbers with this disease, as well as the TIME WE HAVE WAITED – 30 years plus!!! It should be $250 million per year!!!
Please don’t get me wrong – $15 million is still crumbs – but from a Canadian perspective, $15 million for next year, is sheets and yards ahead of the Canadian Institutes of Health Research funding to finish out a three year grant = $45,000 (45 thousand) for 2017- 11 cents/ME patient for 2016:http://webapps.cihr-irsc.gc.ca/cfdd/db_run_search
The 2014 Canadian Community Health Survey reported 407,789 Canadians diagnosed with this disease, http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng,htm
I have mentioned before, but from the year 2000 to 2015, the CIHR has spent $1.45 million (one million, 450 thousand dollars) on ME research – from February 13, 2016 letter – federal Health Minister, Dr. Jane Philpott. This averages out to about 22 cents/ME patient.
The Canadian ME community has not received any information about research funding for next year. We have been told: ” CIHR is currently investigating alternate ways to advance ME/CFS research, and will continue to work with national and international partners [hopefully not the NHS!!!] to address this research gap. At the same time, CIHR continues to encourage researchers who are interested in pursuing research on ME/CFS to apply for funding through its investigator-initiated health research programs. For further information about these funding programs, please visit CIHRs website: http://www.cihr-irsc.gc.ca/e/49934.html The application period for this funding was September 8 to October 18.
The CIHR letter I received with the above info was dated October 19…there’s no where to go but up…I hope!!!
Jennie,
You are a gem. Thanks for championing us and getting facts to us.
Take care of yourself.
Thanks for your hard work and reporting and giving your availability to NIH.
I, too, am concerned about the “depending on partnership with the patient community,” like we have to be “good” and not demanding or impatient. I thought he would say, “depending on partnership with the scientific research community.”
We’ll see what happens. Also, I am not so optimistic about the upcoming NIH budget for medical research. Looking at the aims of the next administration, they want budget sequesters, and they’re looking to cut funding for many programs.
I’m very worried about Medicare as they have their eyes on that and on the Affordable Care Act. But it’s not over until it’s over and we’ll have to see what the public does and Congress.
An addendum: I do not know the exact date I got sick, but this month marks 31 years that I have been sick. I got EBV virus badly, affecting my spleen and liver, and then I became chronically ill.
Jennie, I suspect that the last thing in the world Dr. K. would want is to have to spend an hour or two talking to people like you, Carol Head, Mary Schweitzer,…. et al. The world of NIH seems so inturned–so deaf to the outside real world. And getting further and further behind with every month. I suspect that they are still in process of deciding whether or not we are really worth supporting in any large scale way, and are playing a kind of holding game to see how things develop.
I know you will let us all know if you get that invited, but not expected, response to your brave offer!
Jennie thank you for your work as always keeping us informed
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A friend reblogged my post funneling things to your site, in Australia/Tasmania. Keep spreading the information – we’ll keep pointing to you.
‘The Horse’s Mouth” sounds like a tavern, doesn’t it?