Another week, another $20,000,000+ in RFAs, and nothing for ME/CFS. It’s an unfortunate routine.
But it bears repeating that we have an opportunity to speak up, and tell NIH what priorities should be the focus of future ME/CFS research. The deadline for response is June 24th, and I offer some ideas and inspiration in this post.
- Total RFAs Issued by NIH: 245 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,114,715,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 6/13/16 | 5 | $21,475,000 | Zero |
| 6/6/16 | 5 | $7,100,000 | Zero |
| 5/30/16 | 4 | $6,900,000 | Zero |
| 5/23/16 | 8 | $42,400,000 | Zero |
| 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.
Clearly NIH does not understand the urgency. This snail’s pace science is an inadequate response to a pandemic that continues to spread. They’ve had decades to get it right. It is unimaginable we are still waiting for adequate funding.
I have observed my daughter’s life being trashed by this illness for 16 years. She’s 31 this week and cannot plan any life, yet medical professionals have zero understanding of the impact. No diagnosis, no treatment, no evidence-based guidelines, no recognition by family or GP. NICE Guidelines not only unhelpful but destructive if followed. I believe this is because many believe to have recovered, didn’t have ME in the first place. To have ME a few months then recover is post viral fatigue and is skewing support needed for so many who cannot function for hours, days, weeks, months, years. Even the uneducated support systems meant to help the disabled are ignoring this disease now known to be worse than cancer, to those unfortunate to have both.
The bureaucrats and medical profession don’t understand this disease. It quietly destroys lives, but I think they think it can be brushed under the rug. It’s not ravaging communities and countries, isn’t highly contagious, isn’t clogging up hospitals, isn’t visible, etc. They don’t understand it and since it’s not an emergency — to them — they can keep ignoring it.
Good luck to everyone who can write to the NIH, I don’t think I can. Don’t have the energy. If anyone wants to write a mass letter, I’d sign it.
And my question remains: Why doesn’t the NIH seriously read and take direction from the IOM report? It’s mind-boggling to me that the officials are not doing that. It feels like that was just cosmetic, for appearances, because it appears that the content of it is not being taken seriously.