The RFA Ticker continues to show a big fat ZERO for ME/CFS research, but there is one interesting bit of research-related bit news. NIH has issued an updated notice about the Lipkin samples. These samples were collected as part of the Lipkin study of XMRV, and were collected from very well characterized ME/CFS patients. The notice states that NIH considers these samples to be “an extremely valuable resource,” and:
we encourage the submission of new grant applications to the NIH that involve the use of some of these specimens as part/all of a research plan on some aspect of ME/CFS. However, please note there are no set-aside funds associated with these samples. Prior to the submission of a NIH grant application utilizing these samples, interested investigators are encouraged to contact Dr. Lipkin to ensure that the proposed experimental plan meets the terms specified in obtaining informed consent from study subjects and/or other regulations.
It is astounding to me that these samples remain. Have ME/CFS investigators applied for NIH funding to use the samples and been rejected? Or are investigators simply not aware of the resource available to them? It’s a positive sign that NIH is reminding everyone about the samples, but disappointing that there are no set aside funds to support analyzing them.
- Total RFAs Issued by NIH: 140 (October 2015 to date)
- Total Dollars Committed to RFAs: $1,581,000,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 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 | 6 | $11,550,000 | 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 imagine that it is both. We have more samples than interested investigators. Simmaron is actually using the XMRV samples in its vector borne illness study but it was the first gone granted access. I wonder if anyone else has even applied.
About the RFA issue: When I read the notes from Carol Head’s talk with Koroshetz and saw that he brought up the question “but why not fund ME/CFS research privately?!?” – I just felt: wow, we really are never going to get an RFA.
When the person leading the Trans-NIH Group and the new NIH effort – which is supposedly designed to ensure that ME/CFS research is adequately funded – doesn’t apologize for the state of funding for ME/CFS at NIH and doesn’t promise changes, but starts talking about *crowdfunding*…..?
Sir, it’s YOUR JOB to finally fund ME/CFS equally to similar diseases! YOUR JOB to bring us up from the bottom 15 of the NIH barrel. A job that is 30 years overdue.
I think I give up some days.
Re: Annie O’s comment on Carol Head’s talk with Dr. Koroshetz, where can I find this information? Could you provide a link? I could not find it on the SOLVECFS web-site. I would like to understand the discussion and Dr. Koroshetz’s comments. Thank you.
It took me awhile to find it, Jim! It’s actually on Cort Johnson’s site:
http://www.cortjohnson.org/forums/threads/ninds-director-expresses-shock-and-awe-at-community-response-to-clinical-center-study-protocol.3652/
Thanks for this, Jennie.
It was interesting to go the the NIH site and look at everything ELSE being funded. I’m Canadian, so I didn’t sign the petition that was mentioned in one of the replies to your inaugural “ticker” post, but I was wondering if perhaps there are any researchers that you respect that you might like to “remind” about the NIH commitment… just an idea.
Jim and Jennie:
Here’s the conversation between Carol Head and Koroshetz:
http://cfstreatment.blogspot.se/2016/02/new-nih-study-raises-doubts-concerns.html
Scroll down to
“This is the response NIH made to those questions
From Carol Head”