Virtually Reality

Today, the CFIDS Association announces its latest research grants and projects. I know many of us want to dive into the details of the grants, but I want to first take a look at the big picture. The Association describes its research program as an “institute without walls” and all the pieces of the program are designed to work together. With a $2 million investment in 2012 and 2013, this program is one of the most diverse and complex in the field.

Before 2008, the focus of the Association’s research program was funding studies initiated by principal investigators. But after the Association re-focused its strategy to put research first, and with the hiring of Dr. Suzanne Vernon as Scientific Director, the research program became multi-prong. In addition to providing direct funding to researchers, the Association created the SolveCFS BioBank  – the first national bank of CFS biological samples and clinical data that any researcher could apply to use. The 2009 grantees were linked, both via computer network and in person, to increase the sharing of information and ideas. Dr. Vernon has presented at dozens of meetings all around the world, and provided expertise to other researchers and institutions. And last year, the Association recruited a Scientific Advisory Board of experts both inside and outside the field.

Positioned at the hub of the wheel, the Association will direct all aspects of the program announced today: maintaining and expanding the SolveCFS BioBank; funding and administering the five new research grants; investigator meetings; Scientific Advisory Board meetings; work with LogosOmix (see below) to create a biomarker hit list; coordination and management of the research program to drive outcomes and results; and, travel to meetings and to build collaborations with other organizations and institutions.

There are five new grants investigating pain, immune/HPA axis dysfunction, neurocognitive impairment, post-exertional relapse, and drug repurposing. Grants have been and remain a key piece of the program. The Association also announced two new BioBank studies today:

• Dr. Leonard Jason (DePaul University), who has done great work on the case definitions used in CFS, will use clinical information from SolveCFS BioBank participants to examine the multiple case definitions that clutter the landscape. Dr. Jason has previously demonstrated the danger that the CDC’s 2005 empirical definition of CFS may include many patients with primary depression. The SolveCFS BioBank has very detailed data on participants’ symptoms, and comparing that data to the case definitions may reveal the utility of one definition over another.
• Dr. Eric Delwart (Blood Systems Research Institute and University of California, San Francisco) will use metagenomics to search BioBank samples for infectious agents. (Listen to a June 2010 interview with Dr. Delwart on This Week in Virology Episode 86) Metagenomics  is an approach to deep sequencing in which all the DNA in a sample is sequenced, including microbes that cannot be cultured. Bioinformatics is then used to sort out the sequences, identifying known and unknown microorganisms in the sample. This approach is similar to that used by Dr. Ian Lipkin at the Center for Infection and Immunity.

CFS patients know the importance of finding biomarkers for this illness. How many of us have longed for a simple clinical test that would definitively say that we do (or do not) have CFS? In 2009, the Association funded a project to mine the published literature and develop a relational database to identify possible etiologies for CFS.  Now LogosOmix, a startup venture, will partner with the Association to develop a hit list of possible targets for clinical biomarkers. The Association plans to shop that hit list to biotech firms and researchers to facilitate development of the markers for clinical use. Details on LogosOmix are scarce, but Association CEO Kim McCleary told me, “LogosOmix is a very exciting project that is a product of the grant made in 2009-2010 to Dr. Bud Mishra at New York University. This project will give us a ‘big data’ tool to help guide the next generation of CFS studies and may have applications beyond the CFS as well. We are still working through various details and will have more information to share in the coming weeks.” When more details become public, I will write about them here on Occupy CFS.

Taken together, these projects address the top issues in CFS research: case definition, pathogen discovery, clinical biomarkers, and treatment development. The CFIDS Association is outsourcing these components to researchers, but is facilitating and coordinating their work. This approach has already proven itself in the outcomes of the Association’s 2009 grants, which resulted in a 7 to 1 return on the Association’s investment.

One more part of today’s announcement deserves mention. Author Laura Hillenbrand  has made a gift of $250,000 to the CFIDS Association in support of the research program. I have admired Laura Hillenbrand for years, and I am truly inspired by what she has achieved while living with severe CFS. Her generous support of CFS research could have an impact beyond the research itself. CFS advocates have wanted a celebrity spokesperson to help legitimize and publicize this illness. While Laura is not offering herself as that spokesperson (and I completely respect that choice), her support of CFS research may help legitimize CFS research in the eyes of the public.

At last year’s NIH State of the Knowledge Workshop,  Dr. Suzanne Vernon pointed out that a major opportunity in CFS research was to make it “silo transparent.” The traditional way of doing research doesn’t work in CFS. Researchers have stuck to their own specialties, and it has been difficult to attract new researchers to the field. One of the major contributors to the advances in treating childhood cancers was that researchers got together and worked through problems together, creating a level of coordination and cross-pollination that would not have existed otherwise. The Association is poised to facilitate the same kind of progress in CFS. This research portfolio resembles, in many ways, a virtual center of excellence. It does not include a clinical care component, something that patients want and need. But rather than wait years to build a physical institution that can provide clinical care, the Association is deploying resources to move research forward and pursue improved diagnostics and treatments now. Hopefully, the answers found through this effort will be deployed in treating CFS patients in all clinical settings, not just one center.