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Today, Thursday 15 Oct: Solve webinar with Dr Alan Light: New Developments in ME/CFS Research

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Oct 15, 2015.

  1. Sasha

    Sasha Fine, thank you

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    6-7 pm BST
    1-2 pm EST
    10-11 am PST


    Solve ME/CFS Initiative Webinar, Alan Light, PhD, Research Professor of Anesthesiology, University of Utah

    You need to register - go here:

    https://attendee.gotowebinar.com/register/2090904248364180738
     
  2. Seanko

    Seanko Senior Member

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    As a taster, check out Dr Light's videos on YouTube for the Dutch ME/CFS Society (ME/cvs Vereniging) on YouTube

     
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I have a meeting at that time - wonder if they will post the video later - or if some one here can give us a quick recap that'd be awesome too.
     
    Sasha likes this.
  4. Sasha

    Sasha Fine, thank you

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    I think it's likely - they usually post their webinars on YouTube.
     
  5. Sasha

    Sasha Fine, thank you

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    Bump! This is in about two and a half hours. I'm in danger of forgetting it's happening!

    Don't forget that you need to register.
     
  6. Sasha

    Sasha Fine, thank you

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    Bump! 40 minutes away - register now, if you haven't already.
     
    Countrygirl likes this.
  7. Never Give Up

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

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    Three minutes to go.
     
    Sasha likes this.
  8. Sasha

    Sasha Fine, thank you

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    @Jonathan Edwards, Dr Light just said that it looks like individual autoantibodies are likely to be able to be treated soon. I didn't catch whether he said that this would be a better idea than rtx.

    Any thoughts?

    Wouldn't treating specific autoantibodies once they're formed mean that you're on treatment for life?
     
    John Mac likes this.
  9. Sasha

    Sasha Fine, thank you

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    That's it! Big thanks to Dr Light. :thumbsup:
     
  10. BurnA

    BurnA Senior Member

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    Treatment for life is ok for me if it works. Big pharma likes this approach too for obvious reasons. Most RA treatment is for life too as far as I know - hence the number of trials in RA. I think it's every pharma companies dream to get a drug approved for RA.

    I didn't catch any of the presentation, was it good ?
     
    SOC likes this.
  11. Sasha

    Sasha Fine, thank you

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    I think it probably was good but my ability to concentrate is totally shot today - I couldn't take it in (and it would have been over my head anyway!) - but he was trying to link up some key things, including the POTS autoimmune stuff, the Norwegian work, and their own stuff.

    As far as treatment goes, I'd rather get a one-off treatment that fixes me for life!
     
  12. voner

    voner Senior Member

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    if I heard right, Dr. light said he took a look at the at an epittoe on the strepA bacteria and found 85% match to the epitope on B2 androgenetic receptor, so he says there's a case to be made for the possibility of molecular mimicry in an autoimmune situation.

    hopefully, somebody else can affirm but I heard this correctly. He did not have slides showing any graphics about this .

    he also at the end covered his recent work on Lyrica and ME/CFS patients with Comorbid fibromyalgia. interesting results, however I don't know if it's considered "ethical or proper" to discuss his findings before he publishes the data?

    hopefully, somebody can help me out on that.

    I took some screenshots of his slides, if anyone's interested in looking at them before they put the video up on the web.
     
    ukxmrv likes this.
  13. BurnA

    BurnA Senior Member

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    I think we all would !
    But treatments are a bit thin on the ground these days so I'll take whatever is going if it works !
     
    SOC likes this.
  14. Sasha

    Sasha Fine, thank you

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    But what I was thinking was that rtx should surely treat all B-cell-derived autoimmunity if you can knock all the cells out, whereas if you treat the cells once they're produced, you're on a long-term treatment. I don't see why you would ever go for the latter if the former is available.
     
    alkt and Never Give Up like this.
  15. BurnA

    BurnA Senior Member

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    Ok, but lets say you can inject yourself once or twice a month with something that will kill only the autoanitbodies, that might be preferable to killing all your b cells. And killing all b cells doesn't seem to be a lasting treatment at the moment for most patients.
    So maybe if you knew you wouldn't relapse after b cell depletion it might be preferable but still carries risk. Who knows, but maybe targeting only the autoantibodies might be less risky with less side effects.

    Also, lets not forget, they haven't identified any guilty autoantibody so even if it becomes possible to target them they have to identify them first.... Still a bit of work to be done. But maybe slowly all the pieces will come together.
     
  16. Sasha

    Sasha Fine, thank you

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    From what @Jonathan Edwards has said, the trick seems to be to wipe out all the B-cells and not leave the odd few, and that the patients who make what look like full and lasting recoveries are the ones in which that has properly happened.

    But yes, maybe I'm thinking of a sci-fi version of rtx treatment in which we work out how to do this - but RA isn't curable with rtx (is it?) so maybe this isn't possible.

    I seem to be talking through my hat, as with all things biomedical.

    As you were. :whistle:
     
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  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Thank you for covering these things Sasha! Much appreciated.
     
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  18. BurnA

    BurnA Senior Member

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    Ha, I dont think you are talking through your hat and who knows maybe in the future there will be a choice of treatments ( imagine that !)
    One might be full b cell depletion with the next generation rtx, whatever that turns out to be, and the other choice could be targeted at autoantibodies.

    This is realistic in that if a better b cell depleting agent is on the market first it will always be there as an option, even if a newer drug can target the specific autoantibody.
     
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  19. Sasha

    Sasha Fine, thank you

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    There are more good webinars coming up, BTW - Dane Cook and Zaher Nahle.
     
  20. Sasha

    Sasha Fine, thank you

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    Valentijn and Bob like this.

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