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Phoenix Rising Researcher of the Year (2008)

Discussion in 'General ME/CFS News' started by Cort, Dec 12, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    http://aboutmecfs.org/Rsrch/ResearcherYear08.aspx

    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 a 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 researcher 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 [​IMG]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 it's 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 did gotten new researchers interested in this field?

    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 to will 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 realm 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 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 how it went.

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

    A Bold Effort

    Collaboration - Dr. Vernon believes increased collaboration will be essential for our research communities success. She knows the power collaboration can unleash. The Pharmacogenomics projects she lead at the CDC - which ended up thrusting ME/CFS into the research spotlight and helped triggered the National Press Conference - was the result of a single discussion at a conference.

    The need to foster collaboration, maximize resources and speed up the pace of research lead Dr. Vernon to produce her boldest project yet; the creation of an International CFS Research Network. I asked her to explain more why a Research Network was needed.

    Have research networks of this type have formed in other diseases?

    Another problem concerns standardization. As crazy as it may sound ME/CFS researchers are using different tests and different techniques to study the same problem. This means it can be difficult to compare tests across studies. When a community is only producing a relatively small number of studies a year that’s a significant problem. Just getting researchers to develop gold standards for testing could help significantly

    It could go further than that. Dr. Cheney, for instance, has a well characterized patient base and presumably enormous amount of data on diastolic functioning on his patients but has never been published it in a major journal. A Research Network could concievably provide him and others the opportunity to get the assistance they need to publish. Sometimes it’s just a matter of getting people together.

    Dr. Vernon is not the first to think a research network would be a great thing. A big problem - not surprisingly - has always been money; how does a poorly funded and scattered group of researchers get the resources to band together? Money will obviously be needed but Dr. Vernon wants to use federal resources as much as possible.

    The network is just getting off the ground. When asked how big it is right now Dr. Vernon stated

    Getting researchers working together and sharing ideas data and samples would benefit all of us. Hopefully Dr. Vernon and the CFIDS Association will find the funding to get this network established.


    Dr. Vernon could have won the award simply on the strenght of her research. Somehow as all this was going on Dr. Vernon managed to publish six papers on chronic fatigue syndrome (ME/CFS) in 2008. Illustrating a remarkable breath of interest and expertise the papers focused on such subjects as the serotonergic system, inflammation and immune signaling, altered neuro- immune and immune networks, exercise, cytokines and a possible genetic marker.


    Dr. Vernon's Recent Research


    • Cytokine polymorphisms have a synergistic effect on severity of the acute sickness response to infection.
    • Evidence of inflammatory immune signaling in chronic fatigue syndrome.
    • Neuroendocrine and immune network re-modeling in chronic fatigue syndrome
    • A systems genetic analysis implicates FOXN1 in chronic fatigue syndrome
    • Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome.
    • Model-based therapeutic correction of hypothalamic-pituitary-adrenal axis dysfunction.
    • Research

    (In 2009 Dr. Vernon outlined an innovative model which suggested the HPA axis of ME/CFS patients might be stuck in a suboptimal loop. The solution? For a very short period of time mop up as much cortisol as possible in order to force the system to reset. No one to my knowledge has tried this yet. )

    XMRV

    Since XMRV is on top of everybody's mind I wanted to get her take on some aspects of XMRV that are germane to the CFIDS Associations and others research efforts

    XMRV is a really exciting, really hot finding. A lot of non XMRV research findingsnbsp; have been developed over the years; there’s the low blood volume, the HPA axis abnormalities, the metabolic related exercise problems, the orthostatic intolerance, the gastrointestinal enterovirus findings, etc. There are alot of research findings that can’t at least at this point be directly linked to XMRV. Lets say XMRV is the ‘Game Changer’ in ME/CFS; will research focused specifically on those areas still be relevant?

    The CDC research team has done a lot of research on the HPA axis and you developed a model suggesting that ME/CFS patients had become kind of trapped in a dysfunctional HPA axis feedback loop. You also developed a model which suggested that briefly reducing cortisol levels to very low levels could cause ME/CFS patients systems to kind of spring back into normal functioning. XMRV has cortisol receptors. Can you explain how XMRV, cortisol and the HPA axis might interact?

    What is the CFIDS Association doing regarding XMRV?

    The CFIDS Association is a small organization and much work remains but Dr. Vernon has brought a spirit of innovation and vision to this field that is sorely needed. Given that it was no surprise that the Research Community jumped to their feet and applauded when she was accepted an award at the IACFS/ME Conference. Phoenix Rising is proud to have her as its researcher of the year for in2008
  2. Cort

    Cort Phoenix Rising Founder

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    It was all me WildDaisy - not democratic at all!
  3. fresh_eyes

    fresh_eyes happy to be here

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    But this is a reprint, right? It's from '08?
  4. Katie

    Katie Guest

    Actually I think Wildaisy has a great idea, a 'People Choice' would be great but rather than have one winner which neglects the collaborative nature of ME research but have a Roll of Honour which people can add to, elaborate on and generally share their thought on influential people from this incredible year. If this should be a new thread just copy and paste this over :)

    For example...

    Dr Judy Mikovits for being the most fabulous bartender/virologist we could ever have known :D

    Dr Dan Peterson for being tenacious and following the viral tail of this disease

    Dr Nancy Klimas for her performance at the CFSAC, gosh she was impressive, a scientific tiger

    Dr Donnica Moore for being our voice and combining it with her knowledge and kindness. She's done a valiant job

    Annette Whittemore for being all of ours mother, what she's doing for her daughter she is doing for us all

    Dr Lombardi for trying to do things right

    The New York Times for following this up and giving it the attention is deserves

    Wanda Jones for her email ettiquette! And most importantly her openness and transparency

    Dr Kerr for his gene expression research which is a very important facet and could yield a diagnostic test in the near future. I really appreciate the work he's put in and the results he's getting fills me with hope


    To everyone at the CFSAC who have seize this XMRV and are trying to do their best to give it a fair hearing.

    To everyone who wrote to Dr Oz and made things happen, it was amazing to see sofa activism in action :D



    Those are the ones who immediately spring to mind. Anyone else want to share in the Roll of Honour?
  5. starryeyes

    starryeyes Senior Member

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    Dr. David Bell for putting off retirement in light of this discovery and seeking to find his original 61 patients from the Lyndonville Outbreak in order to test them for XMRV.
  6. fresh_eyes

    fresh_eyes happy to be here

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    Excellent idea, Katie! How about making this into something official (or at least official-sounding)?
  7. Katie

    Katie Guest


    Whatcha got in mind Fresh Eye? Perhaps a single thread and then we combine everyone's input under each name and post it for all to see?
  8. fresh_eyes

    fresh_eyes happy to be here

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    That seems like a great place to start.
    Then we name ourselves, I don't know, the International Consortium for Neuroimmune Diseases, and start giving out Medals of Honor and sending out press releases. :D
  9. Katie

    Katie Guest


    Well I certainly think it deserves a thread, I'll set it up now.

    As for medals, I'm hoping there might be Nobel Prizes coming their way in 2010... *begins to dream*
  10. Cort

    Cort Phoenix Rising Founder

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    It was for 2008; if XMRV works out Dr. Mikovits will surely win for 2009.

    Phoenix Rising Researcher of the Year for 2008

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