Those Lipkin Samples

You may recall from my post on the Lipkin study that Dr. Lipkin talked about the sample cohort at the press conference on September 18th. Dr. Lipkin said that the samples would be available for other investigators and that applications to use the samples should be made through NIH. In his interview with Dr. Vincent Racaniello on This Week in Virology, Dr. Lipkin said:

We’ve been able to store sera and PBMC so that other investigators who want to do either microbiology, or genetics or proteomics will be able to access those samples through the NIH. There will be calls for proposals, and there will actually be funding associated with that.

During the interim, we offered the laboratories and the investigators and the clinical sites who were engaged with this work to put forward proposals to do something with these materials in advance of that RFA, though without any funding. Two of those groups..well, several groups applied. Two of them were selected by the entire team, and they will be receiving plasma samples that they can then study. The primary focus has been on microbiology and genetics, but I’m sure there will be other applications as well. (emphasis added)

Obviously, the availability of these samples and the possibility of funding is of great interest to the CFS community. NIH spent more money on the Lipkin study than any other CFS study in 2011, and the results came well after the XMRV question seemed settled with the retraction of the original study by Science. If the samples can be used in future studies, especially if NIH provides funding for such studies, then that will be a huge win for CFS.

I asked Dr. Susan Maier, chair of the Trans-NIH ME/CFS Working Group and ex officio representative to the CFS Advisory Committee, for additional information. She provided the following clarifications by email on September 21st:

We are very pleased that Dr. Lipkin has offered to make remaining specimens available to any ME/CFS investigator who successfully competes for NIH funding.   Dr. Lipkin and NIH program staff agreed that the NIH peer review process would offer the fairest means to decide who should have access to these samples.  Consequently, interested investigators will be advised to consider currently available and relevant NIH funding opportunities in order to pursue these samples. NIH will be issuing a notice in the NIH Guide to Grants and Contracts very soon that will elaborate upon these points.  However, it is important to note that there are no set-aside funds associated with these samples.  In addition, Dr. Lipkin’s laboratory will maintain these samples, which is standard NIH protocol. They will not be stored at NIH.

With regard to the two investigators who have already received samples, Dr. Lipkin was referring to his study collaborators.  This is separate from the process described above. (emphasis added)

So there will NOT be any set aside funding or RFA. Investigators will apply through NIH and the normal NIH peer review process, but there will be no new money. I’m not sure why conflicting statements were made by Dr. Lipkin and Dr. Maier. The last RFA from NIH for CFS research was in 2005, and the CFS Advisory Committee has recommended that NIH issue RFAs many times over the last decade. I had hoped that Dr. Lipkin was correct and that we were on the verge of securing an RFA. It appears we will continue to wait.


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4 Responses to Those Lipkin Samples

  1. Eric says:

    Thanks for investigating this. While I was very glad about the message this press conference sent and about Dr. Lipkin’s interest in ME/CFS I also wish that there would not be conflicting information. I don’t know if it will be harder to get funding through the already available funding opportunities, but maybe set-aside funds would have led to more funding for ME/CFS research in total.

  2. Anne Ö says:

    Thanks for clearing this up. But DAMN. When are we ever going to get that RFA?

  3. Pingback: Multicenter Study Reports No XMRV/pMLV in CFS/ME

  4. Mirfozil says:

    Undecipherable ME/CFS gibberish?It’s eaisly understood by almost anyone. ME/CFS refers to an illness that possesses all the primary determinants of ME and is rooted in scientifically identified abnormalities in the brain (central nervous system) and the immune system, both of which affect and alter the function ofthe other. – Understanding Chronic Fatigue SyndromeChronicFatigueSyndromeSupport.com06-06-2003 By Jill McLaughlinChronic fatigue syndrome (CFS) disproportionately affects women, buthas long been under-recognized and under-diagnosed. CFS is now oneof the most common chronic illnesses of our time. It is also one ofthe most misunderstood. Private and government research isshattering many misconceptions, showing chronic fatigue syndrome tobe a major public health problem.Although there is no known etiology and no known diagnostic marker,there is substantial objective, well-documented evidence of centralnervous system, (CNS), immune, endocrine, cardiovascular, andautonomic nervous system abnormalities which indicate that CFS isbiologically, not psychologically, determined.The leading model of CFS pathogenesis is rooted in scientificallyidentified abnormalities in the brain (central nervous system) andthe immune system, both of which affect and alter the function ofthe other.-Jill Mclaughlin

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