Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Webinar with Dr. Alan Light on Novel Gene Variants in ME/CFS and Fibromyalgia

Discussion in 'Upcoming ME/CFS Events' started by RL_sparky, Jan 31, 2017.

  1. RL_sparky

    RL_sparky Senior Member

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    California
    [​IMG]

    Novel Gene Variants in
    ME/CFS and Fibromyalgia
    with Alan R. Light, PhD

    Wednesday, February 1
    6pm Mountain/7pm Central

    (note new, earlier time)


    Watch LIVE at
    http://www.youtube.com/c/OfferutahOrg/live
    No registration required. Come as you are - tune in from anywhere!

    Learn moreHERE
    Unable to make it? View the recording later on
    our YouTube channel or in the patient library.

    If you are in the Salt Lake area, attend in person and join us for live Q&A after the presentation, as well as a chance to meet other locals whose lives are similarly impacted:
    At the NEW BHC Education Center
    24 South 1100 East, Suite 205, SLC, UT
     
  2. bertiedog

    bertiedog Senior Member

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    South East England, UK
    Am I right in thinking that is 6 pm GMT?
     
  3. Butydoc

    Butydoc President

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    Dr. Light is an impressive researcher as is his wife. My whole family is involved in this study and hope this gene expression study will yield useable results. I was informed that it will take approximately 3mo before my families results become available.

    Dr Davis from Stanford meet with the Lights during the Sundance film festival and will be collaborating with their research. It appears both groups are getting closer to the cause of this disease. Dr Davis commented during a special showing of Jen Brea's documentary at the festival. He stated emphatically that he feels a breakthrough will happen before the end of this year.

    Gary
     
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  4. Barry53

    Barry53 Senior Member

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    upload_2017-1-31_19-53-12.png
    upload_2017-1-31_19-51-43.png

    It will be 1 a.m. GMT Thur 2 Feb.

    MST is 7 hrs behind GMT, so 6 p.m. 1 Feb MST will be 1 a.m. 2 Feb GMT. (GMT same time as UTC).

    (Pretty sure that is right).
     
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  5. PNWMom

    PNWMom

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    I talked with Dr Light last spring at a Bateman Horne event. He mentioned he was applying for NIH then. Is this "Novel gene" study that project? Does anyone have more details? I'd like to know who is working with him on it. Wouldn't there be a public record of it somewhere?
     
    Last edited: Feb 1, 2017
  6. wastwater

    wastwater Senior Member

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    Will be interesting to see what they find
     
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  7. Kati

    Kati Patient in training

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  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Did anyone watch it live? Highlights?
     
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  9. Kati

    Kati Patient in training

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    I took screenshots. i will try to format them and post them. Chances are, the webcast will appear on you tube.
    His research is turning towards antibodies and mito. He says there may be a double hit requirement in order to get ME. Tyere seems to be genetic mutations/aberrations in Mito DNA.
     
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  10. Kati

    Kati Patient in training

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    Slides 1-5 (there are over 20 of them)

    IMG_1658.JPG IMG_1659.JPG IMG_1660.JPG IMG_1661.JPG IMG_1662.JPG
     
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  11. Kati

    Kati Patient in training

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    Slides 6-10

    IMG_1663.JPG IMG_1664.JPG IMG_1665.JPG IMG_1666.JPG IMG_1667.JPG
     
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  12. Kati

    Kati Patient in training

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    Slide 11-15

    IMG_1668.JPG IMG_1669.JPG IMG_1670.JPG IMG_1671.JPG IMG_1672.JPG
     
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  13. Kati

    Kati Patient in training

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    Slides 16-20

    IMG_1673.JPG IMG_1674.JPG IMG_1675.JPG IMG_1676.JPG IMG_1677.JPG
     
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  14. Kati

    Kati Patient in training

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    And the last 6 slides (21-26)

    IMG_1678.JPG IMG_1679.JPG IMG_1680.JPG IMG_1681.JPG IMG_1682.JPG IMG_1683.JPG
     
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  15. Kati

    Kati Patient in training

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    The recruitment for his next study will start this month, and will require patients to get blood drawn at the hospital in Salt Lake City and fill out questionnaires online. It is to validate his preliminary findings described in this presentation.
     
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  16. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  17. Rossy191276

    Rossy191276

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    One thing I am now confused about is that Dr Davis and others have said that their findings suggest that the problem is not in the Mitochondria rather the mitochondria are just the end result of other issues... Whereas to me this research suggests that the problem is in the Mitochondria...

    Yet at the end of the presentation I thought Dr Light said that these findings align with the metabolic studies so far??
     
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  18. Kati

    Kati Patient in training

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    Hi @Rossy191276 i believe it is Dr Davis' team that suggested that the role of mitochondria was both to provide energy and to take a role of immune signaling and that if this was the case, it would suggest that mito were busy doing immune signaling and not so much providing energy for the cells.

    Sorry I have no link for this but the Naviaux et al. Paper would be a good start.

    I think that few teams are working on this issue through metabolomics and hopefully we will have more definitive answers this year.

    Welcome to the forums by the way!
     
    Last edited: Feb 2, 2017
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  19. Rossy191276

    Rossy191276

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    Thanks for the welcome! I'd be keen to hear others insight on this as well :)
     
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  20. Murph

    Murph :)

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    I found this absolutely fascinating. Thanks to Dr Light for the presentation and to @Kati for putting the slides up.

    A few points

    1. If in fact mitochondrial genetic mutations are the ultimate upstream source of our problems, then it is definitely good news that the Crispr gene editing technology is believed to work on mitochondrial DNA.

    Source: https://www.hindawi.com/journals/bmri/2015/305716/

    2. However this is a pilot study, not the sort of study on which you base treatment decisions. It's designed to guide future research, (And happily it seems Light has funding, and is proceeding with that future research. :) )

    3. I was initially underwhelmed by the statement that there was (almost) no overlap in the genetic mutations in patients vs controls. As I understand it, mutations are random (especially when they are environmental, i.e. not inherited) and while mitochondrial DNA is limited compared to nucleic DNA there's still a lot of it and I'm not sure you'd expect much overlap. Once you dive into the detail it's a bit more suggestive, however. I'm interested in this but not utterly convinced.

    3.1 That said the graph showing decreased mitochondrial proteins in FM patients is impressive.

    4. Like @Rossy191276 I don't understand how this fits with the recent findings that the problem is in the serum and our cells are okay.

    5. His is a complicated theory of the disease, requiring a particular combination of genetic problems followed by certain pathogens and an auto-immune response, and subsequent problems too. Fans of Occam's razor may be unimpressed. (I think sometimes you have to let Occam's beard grow long.)

    6. I like his idea for a clinical trial of propranolol to test its effect on beta-receptor autoimmunity. I recently went off the drug for about ten days and then back on it and my sense is it really helps in my case, even though the heart rate effect is not massive.
     
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