New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Feb 2: Alan & Kathleen Light speaking in Salt Lake City, Utah

Discussion in 'General ME/CFS News' started by Dolphin, Feb 1, 2011.

  1. Dolphin

    Dolphin Senior Member

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    Saw this in the OFFER e-newsletter:
    Another source: http://www.offerutah.org/educationmeetingschedule.htm
    OFFER website: http://www.offerutah.org/index.htm

    No questions for me, please.
     
  2. LaurelW

    LaurelW Senior Member

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    I'm going to this, so will report back if I hear anything new.
     
  3. Cort

    Cort Phoenix Rising Founder

    Please take good notes Laurel - they have exciting work going on....:)
     
  4. acer2000

    acer2000 Senior Member

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    Any update?
     
  5. Gemini

    Gemini Senior Member

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    Any indication of when a diagnostic test will be developed?

    Are they waiting for the outcome of the availability of an XMRV test? I think there was a financial question that an XMRV test would be easier and less expensive to administer to large numbers of patients?

    Did they go back and test their cohort of patients for XMRV or other infections?

    Their work is so interesting... any information would be much appreciated...
     
  6. LaurelW

    LaurelW Senior Member

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    Sorry, I came down with a cold and was unable to go. Shane went, so maybe he'll report.
     
  7. CBS

    CBS Senior Member

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    Gemini,

    I was able to attend the presentation by Alan and Kathy Light. Both of the Lights were very generous with their time. The formal presentation was followed by a lengthy Q & A. I don't think anyone left with their questions unanswered. The presentation and the Q & A were video taped and OFFER has a copy of the slides. I was told that the video (and most likely the slides as well) should show up on the OFFER site in the not too distant future.

    Note that I am using the term CFS as that is what the Lights used. I suspect but have not confirmed that Dr. Bateman had selected ME patients for these studies.

    To answer your question, several months ago, Alan Light stated that the possibility of an XMRV association with CFS and a simple blood test for the retrovirus had made investors anxious that funds put into his work on a genetic expression biomarker could lead to something that would be obsolete before it was finished. The good news of the evening was that work is moving forward on a biomarker with some clear early results as well as what was a best guess on a timeline for a other of biomarkers. The "bad news" was that working with Dr. Singh, the Lights felt that "XMRV is turning out to be a tough nut to crack."

    Also, before I give a few specifics, please note that much of this work is in the publication pipeline and I was taking notes as quickly as I could while still trying to attend to what was being said as I wrote down the previous point. I reserve the right to be proven inaccurate by the video tape, the powerpoint slides or any future publication. Also, for the most part, I am going to stick to generalizations when it comes to genetic markers and what has been found.

    The presentation included a discussion about the basics of genetic expression.

    Genetic expression is measured by looking for specific segments of mRNA (messenger RNA). DNA is related to but is not the same as genetic expression. Genetic expression is the expression of the genes encoded for in your DNA (these genes make proteins) and the signals to produce these proteins can be either up regulated or down regulated.

    Genetic expression is primarily governed by environmental factors. Environmental factors include both the environment of the cell and the environment at large (pollution, chemical exposure, etc.).

    Key points (much of this was presented at the CFSAC meeting):

    A genetic expression biomarker for fibromyalgia that does NOT require an exercise challenge test is a very real possibility in the not too distant future (it was not stated as such but sounded very much like "submitted for publication" if not "in press").

    CFS and CFS w/fibro appear to be quite similar while both are distinct from fibro on two key genetic expression markers.

    Magnitude of differences in genetic expression in CFS and CFS w/fibro appear to be correlated with disease severity.

    A baseline (non-exercise challenge) genetic expression distinction between CFS (with or without fibro) and controls was not identified. I asked if this was true across all levels of CFS severity (as classified by Dr. Bateman on a 1-4 scale) and was told that so far, they had not tested enough CFS patients to have the statistical power to do that analysis reliably (see editorial below).

    The Lights have tested levels of genetic expression in three broad categories; adrenergic (ANS), sensory and immunological. The adrenergic and sensory receptors overlap in many ways and can be thought of broadly as grouping together. The immune expression markers are somewhat more (although not entirely) independent.

    Only one immune marker consistently shows significantly increased genetic expression in CFS patients (IL-10).

    Small drug trials are underway and preliminary results indicate that pharmaceuticals can modulate genetic expression to levels more consistent with healthy controls.

    Funding is the primary limiting factor in terms of the speed with which these studies can be conducted. Tthe Univ of Utah pays the Lights' salaries but other expenses are paid for by outside sources. With a small staff and limited funds for testing supplies you can only run so many patients and you can only investigate a limited number of genetic markers - so choose carefully!.

    Right now the primary source of funding is seed money from the CAA (warning - personal editorial! - what the CAA is doing in this arena is critical - which, in my opinion is why it is so important that the CAA reevaluate its relationship to the patient community and find a way to connect and gain broad patient support) and OFFER Utah (http://www.offerutah.org/donations.htm).

    Pharmaceutical companies are funding some of the work but only work that is directly related to their interests (eg. their meds).

    The Lights are trying very hard to get funding from the NIH.

    This is just off the top of my head and I'm a bit wiped out from the presentation. I'll sit down and look at my notes but I'll probably be off of PR for a couple hours while I try to get some sleep.
     
    Sherlock likes this.
  8. jspotila

    jspotila Senior Member

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    Thanks for posting this summary, Shane!
     
  9. leelaplay

    leelaplay member

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    Thanks Shane!
     
  10. jewel

    jewel Senior Member

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    Thanks so very much, Shane! Do the Lights have a way for the public to donate as WPI does?
     
  11. cigana

    cigana Senior Member

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    UK
  12. Dolphin

    Dolphin Senior Member

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    Don't forget to mention you want the money to go to them (the Lights).
     

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