There was a veritable flurry of RFAs last week, with the most issued in any single week since I started tracking last year. But more than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.
Here are the current cumulative RFA numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 119 | 352 |
| Dollars Committed | $627,707,563 | $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 |
|---|---|---|---|
| 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.
I read that as a ‘fury,’ not a flurry, and that’s about how I feel about this. We have been lied to, again.
What they don’t get is the return on investment. If they cure us, we have an enormous amount to contribute. And the research that leads to OUR cure will help people with Gulf War Syndrome, and a whole host of other illnesses.
They still believe it’s psychological, and that we are ‘doing this to get attention.’ To which I say, WHAT ATTENTION? I don’t know of a single person with ME/CFS whose life is easier because they ‘get attention.’ Not ONE.
Sorry for preaching to the choir.
Thank you for your relentless pursuit of the RFA information, at what must be great personal cost.
I wish I could sell enough of my novel to make a contribution to research – but it’s going too slow. And CFS bloggers in general are too sick to read it. And the well people who read it are not CFS activists.
LOL re “WHAT ATTENTION?” – so true Alicia.
Hi Jennie,
Thank you once again for your continued work to inform our community! One wonders what will move this behemoth, (NIH) and its inhabitants where ME is concerned. They are fully capable it seems, of rushing to fund other diseases.
It stretches the imagination to come up with reasons why they are stalling, other than the very evident ones: 1) they don’t give a rat’s patootie about persons with ME; 2) an administrative glitch that is TWO YEARS LONG (!!!) – some would say 3 decades long!; 3) continued pressure from vested interests; 4) concern for their own careers; 5) they have funded all they planned to fund; 6) they continue, despite overwhelming evidence to the contrary, to believe ME is a mental health disorder; 7) all of the above, and then some. If stalling was an Olympic sport, NIH would be right up there with the best.
Jennie, thank you for allowing me to update on your blog re the Canadian situation. I have included a letter from the National ME/FM Action Network that follows on the disastrous Canadian Institutes of Health Research (CIHR) grant application denial of this last summer. CIHR heard concerns from many people about the problematic review of this biomedical application. And, CIHR has advised the National ME/FM Action Network if they know of potentially qualified reviewers, to have them contact CIHR. PLEASE NOTE, THE REVIEWERS DO NOT HAVE TO BE FROM CANADA.
This looks like progress! However, the timing is tight to get a good list of names, as the next two grant application closing dates are January 10, 2017. Each of the grants is for $100,000 (one hundred thousand dollars). CIHR ME research funding for 2016 is $45,000 (fourty-five thousand dollars); $200,000 is small, but hopefully a sign of more funding to come. The grant application that was earlier denied, was for $600,000 over 3 years.
If anyone knows of potentially qualified reviewers who are interested, please have them contact the National ME/FM Action Network: email: mefminfo@mefmaction.com; phone 613-829-6667; fax: 613-829-8518; website: http://www.mefmaction.com; mailing address: 512-33 Banner Road, Nepean, Ontario, K2H 8V7, Canada.
I really hope 2017 will see much improvement for our community – we’ve waited a lifetime for help! Happy Holidays to All!
Please see the letter below from the President of the National ME/FM Action Network, Margaret Parlor, re the request for qualified grant application reviewers.
Dear friends
A major lesson that we learned from the previous CIHR catalyst grant competition is the importance of having good people on the committee that reviews the applications — people that are familiar with ME/FM theory, the state of ME/FM research, and the needs of the ME/FM community.
Many people raised concerns with CIHR about the review of the previous catalyst grant application. Lydia and I met with CIHR twice recently to discuss a range of topics, including the fact that there is another catalyst grant competition underway. CIHR wrote back to Lydia and me: “If you know of anyone who would be interested in reviewing for this particular competition, feel free to send me their names. The competition team will be in touch with the ones they feel have the required matching expertize to review the applications that come in to provide them with more information about the timing of the reviews and when they anticipate the committee meeting to happen etc.”
We need good grant reviewers. Therefore:
If you are interested in being a reviewer for this or other ME/FM competitions, please let me know and I will put you in touch with CIHR.
If you can suggest someone whom you think would be a good ME/FM reviewer, encourage them to contact me. Alternatively, you can send me their name and I will contact them.
CIHR did give some indication of the work involved:
Regarding the catalyst funding opportunity which has been posted recently,… a committee will be put together to review applications that will be submitted. Depending on the number of applications received for this specific competition, we would typically assign 4-10 applications per reviewers and provide them with 4-6 weeks to complete their reviews and submit them via our on-line portal. Then we invite the reviewers to discuss their reviews with the rest of the committee either via a teleconference call or in person. We cover the cost of travel when the meeting is face to face but the meetings can go on for a full day (again it depends on the number of applications that we receive).
CIHR also gave some indication of the skills they are looking for:
Reviewers can be from three categories:
Research Experience
Review Experience
Knowledge, Expertise and Lived Experience
Note that the reviewer does not have to be from Canada
Margaret
Margaret Parlor
President
National ME/FM Action Network