Phoenix Rising Researcher of the Year Pt. 1

Posted by Cort Johnson

The Researcher of the Year analysis doesn’t just take research into account; it also includes their outreach into the patient community and their impact on how the research field is functioning. This year the Researcher of the Year was an easy choice. Dr. Vernon excelled in all three categories in 2008.

(As she did in 2009. I only got to the 2008 Researcher of the Year award late in 2009 but my tardiness only worked out to Dr. Vernon’s advantage. In 2009 she picked up on and expanded her work with the exciting new International Research Network – this award includes work done in both years)

Dr. Vernon made an enormous leap when she left the security of a 17 year career at the CDC to become Scientific Director of the CFIDS Association America (CAA). As Scientific Director she was tasked with redoing the CAA’s research program, interacting with government officials to stimulate their efforts, with bringing new faces into the research field, and in general trying to make the entire ME/CFS research field more effective and productive. She has accomplished all of these and it wasn’t easy.

A Difficult Field – ME/CFS researchers are all over the map – or rather the body; they’re studying everything from viruses to the HPA axis to the vascular system. These factors may all connect together in this disease but unfortunately the researchers usually don’t. Virologists do not typically interact with endocrinologists and endocrinologists don’t usually spend much time with cardiologists. Unfortunately, if we’re going to understand this disease, though, those are the kinds of conversations that are needed.

It doesn’t help that most ME/CFS research ‘programs’ consist of one or two researchers working on a shoestring by themselves. It’s difficult to build the kind of communication that drives so much innovation in science when you’re isolated and poor. Plus the shoestring budget most ME/CFS researchers work on means that many of them simply don’t have the money to even begin to assess their theories.

Dr. Vernon well recognizes that these things have inhibited our progress in understanding CFS. In an at times biting speech at the IACFS/ME conference, Dr. Vernon laid out all that the research community hasn’t accomplished in the last 25 years; good diagnostic criteria, biomarkers, identifying subsets, clear treatment programs, etc. XMRV may or may not the big answer the ME/CFS community has been waiting for, but it’s clear that the present ‘Go It Alone’ approach which consists a lot of small teams working by themselves – is not working for them and its not working for us.

How to maximize research efforts? Dr Vernon’s answer is to bring new faces into the field and to above all have our research community be innovative and collaborative in their its approach to this disease.

New Faces/New Approaches

Bringing in new faces with their new ideas and resources is critical. Earlier in this decade, with the apparent failure of pathogen and most immune research, the research field was in stagnation. That’s not so now but with federal funding levels declining dramatically over the past 10 years, ME/CFS is definitely not a field most young researchers would want to bet their careers on. That fact that a postgraduate ME/CFS position with a top researcher at the National Cancer Institute lay unfilled over the past year speaks to the wariness researchers have of embracing this illness- getting new blood into this field is difficult!

Dr Vernon has, however, gotten researchers interested. Almost a third of the researchers that took place in the three day Banbury Brainstorming Session (see below) have not published on ME/CFS. Similarly Dr. Vernon got a slew of new researchers to produce multi-university grant proposals for the stimulus package. With her guidance the CFIDS Association is looking at formerly untapped funding sources at the Department of Defense.

Under Dr. Vernon’s management both the CAA’s Scientific Program and the ME/CFS research field itself has become broader and more varied…and considerably more interesting. I asked her how she’d gotten new researchers interested in this field.

Scientists are a naturally curious lot and many like challenging problems. I like matching up the specific research needs with the right kind of investigator. For example, I knew modeling was important for CFS so I found folks working on modeling various biological systems and introduced them to CFS. Of course it helps to have money to support research – in addition to being curious; scientists are hungry for research dollars!

They’re also hungry for innovation, which is good because innovation permeates the CAA’s Research Program.

A Novel Approach to Research at the CFIDS Association

Researchers beware! The CFIDS Association doesn’t just hand out grants any more; if tweaking your grant will make it more effective Dr. Vernon has shown she is perfectly willing to do that. Three of the six teams funded by the CFIDS Association smashed the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain is now collaborating with the group examining autonomic nervous system problems in the body. Then these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups’ data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS.

Researchers funded by the CAA are now also required to ‘bank’ samples for future use by other researchers, to meet strict deadlines and to collaborate. In that vein Dr. Vernon persuaded the National Institute of Health to produce a WIKI or a secure information gathering site for the CAA’s researchers. Plus, in the past year, all the researchers funded by the CFIDS Association have met twice personally for multi-day conferences to discuss how their findings interact with each other.

In the research arena where ideas are the coin of the realm collaboration is essential. Prior to Dr. Vernon’s efforts the only formal venue for collaboration took place once every two years at the IACFS/ME conferences. If she has her way, ME/CFS researchers – through small intensive conferences and the NIH WIKI and other arenas – will be interacting much more frequently in upcoming years.

“A Nexus For Chronic Fatigue Syndrome” – the Banbury Workshop

The CFIDS Association’s efforts to foster collaboration and creativity culminated in the Cold Harbor meeting in Banbury Center in 2009. The conference’s title “From Infection to Metabolism: A Nexus for Chronic Fatigue Syndrome” evoked the kind of ‘connect the dots’ approach that permeates Dr. Vernon’s approach to this disease. Getting the Banbury Workshop together wasn’t easy. First Dr. Vernon had to get CFS on Banbury’s crowded agenda. Then a grant proposal to the NIH to help fund the conference had to be approved. Then the CFID’s Association of America to come up with their financial contribution during economically trying times.

Ultimately 35 researchers – almost a third of whom had not been formally tied to ME/CFS before – spent three days intimately discussing chronic fatigue syndrome (ME/CFS) – something that hasn’t happened in years. They also laid the groundwork for Dr. Vernon’s and the CAA’s biggest and most important effort – An International Research Network.

I asked Dr. Vernon how the Banbury Workshop went.

Cold Spring Harbor Laboratory (CSHL) is located on Long Island, NY. CSHL is a prestigious institute and provides the perfect setting for brainstorming workshops. Our workshop was held at the Banbury Center, the venue Cold Spring Harbor Laboratory uses for small, invitation-only workshops. Participants stay on the campus in dormitory-like rooms and for 3 days, we eat together, work together and really get to know each other. Eleanor Hanna of the NIH and I organized this meeting and invited CFS investigators with current funding from the NIH and from the CFIDS Association. A handful of investigators and clinicians who do not have current funding, but could be an asset to the research network, were also invited.

After 2 days of excellent presentations and discussions, we spent the last day deciding whether and how to move forward with a research network. The majority of the participants agreed a research network was important and wanted to be a part of it. We agreed on how to start and identified types of funding to pursue for support. In addition to this “big picture” outcome, there were new collaborations formed between investigators and ideas and information exchanged. The investigators who want to be part of the CFS research network agreed to meet at the Banbury Center of CSHL again next year. I have applied for an R13 small conference grant in hopes of making it happen

I wondered if she anticipated a Banbury conference every year? Interestingly, she hoped not – because she wanted to outgrow it rather quickly it.

If we receive funding for the CFS research network, it will likely expand to other interested CFS investigators and we would outgrow the Banbury Center – which is limited to 35 people. It is absolutely necessary to have at least 1 meeting of CFS research network investigators a year. We can hopefully coordinate with the IACFS/ME during the years that meeting occurs to show the community what the CFS research network is and to identify investigators who are interested in becoming a part of it.

  • Next Up: Part II – Dr. Vernon’s Attempt to Energize the ME/CFS Research Field and XMRV and the CAA
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