1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Phoenix Rising tweeting live now from Invest in ME 2014 Conference 30 May

Discussion in 'General ME/CFS News' started by Sasha, May 30, 2014.

  1. Sasha

    Sasha Fine, thank you

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  2. Sasha

    Sasha Fine, thank you

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    Prof Jonathon Edwards giving opening keynote speech now - his comments are fascinating! Get on over there, folks!

    This is @Mark tweeting, I think. Great stuff, Mark!
     
    Esther12, Bob, justy and 1 other person like this.
  3. Sasha

    Sasha Fine, thank you

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    Bob and justy like this.
  4. Sasha

    Sasha Fine, thank you

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    Here's the agenda:

    08.55 Conference Opens Invest in ME Dr Ian Gibson
    09.05 Keynote Speech Professor Jonathan Edwards
    09.35 Finding Antibodies in Neurological Diseases Professor Angela Vincent
    10.10 Infection-induced autoimmunity in ME Professor Jonas Blomberg

    10.40 Refreshment Break

    11.00 Pathogen Discovery in ME Professor Mady Hornig
    11.40 EBV and ME/CFS Professor Carmen Scheibenbogen
    12.10 Gut Microbiome and ME/CFS Professor Simon Carding

    12.35 Lunch

    13.25 Innate and Adaptive Immune Cells in ME Professor Sonya Marshall-Gradisnik
    14.05 Brain Imaging and ME Professor James Baraniuk
    14.45 ANS and ME Professor Julia Newton

    15.15 Refreshment Break

    15.35 Markers of Post-Exertional Malaise in ME Professor Maureen Hanson
    16.10 Diagnosis/Treatments and ME in USA Dr. Andreas Kogelnik
    16.25 Diagnosis/Treatments and ME in UK Dr. Amolak Bansal
    16.40 Diagnosis/Treatments and ME in Clinical Practice - Panel Discussion Dr. Andreas Kogelnik / Dr. Amolak Bansal / Dr. Saul Berkowitz /

    17.05 External View of ME Research Strategy Dr Julian Blanco
    17.20 Plenary Session Dr Ian Gibson

    17.30 Adjourn
     
  5. Sasha

    Sasha Fine, thank you

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    Prof Mady Hornig now.
     
  6. Sasha

    Sasha Fine, thank you

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    Very, very interesting. Mark reports Dr Hornig as saying that "autoimmune disturbances may result from failed uptake of dietary precursors of antioxidants in the terminal ileum".

    Anybody know what those precursors are?

    She says they're about to start a pilot microbiome study next week - great! (See my signature and help fund the big one).
     
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  7. Sasha

    Sasha Fine, thank you

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    Fascinating stuff from Dr Scheibenbogen on EBV and ME.

    Is anyone else following this or is it just me? It's really great stuff! :thumbsup:
     
  8. Kate_UK

    Kate_UK Senior Member

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    I'm watching too.

    So this is a gut thing they are talking about?
     
    Countrygirl and Sasha like this.
  9. aimossy

    aimossy Senior Member

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    I have been watching thanks @Sasha for the link and @Mark for tweeting!
     
    Sasha likes this.
  10. Nielk

    Nielk

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    So far, a lot about possible autoimmunity connection and the gut.
     
    aimossy, NK17, Iquitos and 1 other person like this.
  11. Sasha

    Sasha Fine, thank you

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    Yes - interesting comment just now from Prof Carding that leaky gut can be detected by confocal laser endomicroscopy. I wasn't aware that there was a recognised test - I wonder if this is accepted as a diagnostic test anywhere? In the NHS for example?
     
  12. Nielk

    Nielk

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  13. Nielk

    Nielk

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    Julia Newton:

     
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  14. Iquitos

    Iquitos Senior Member

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    Yeah, lactic acid buildup in my muscles was one of the first things I noticed after I got the "killer flu" that I never completely recovered from. I knew what it was from being an avid jogger up to the time I got sick. I was shocked to find that just the circular movements of thumb and forefinger I used to clean hard contacts at that time made my thumb feel like I had been doing it for hours.

    Thanks for updates, Nielk.
     
    rosie26 and Nielk like this.
  15. Nielk

    Nielk

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    Dr. Bansal:

    @aboutmecfs: Discussing the differences between ME and depression. eg ME patients have adverse reactions to anti-depressants, different sleep issues ...

    @aboutmecfs: ME vs CFS. ME patients have more consistent and significant PEM, greater neurocognitive dysfunction,..
     
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  16. Nielk

    Nielk

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    @aboutmecfs: ME patients exhibit altered pupil reflexes (in at least 67% of patients).

    @aboutmecfs: Conditions that can mimic ME -- EDS, hypothyroidism, Sjogren's, sleep disorders, cardiac dysfunction ...
     
  17. lansbergen

    lansbergen Senior Member

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  18. Nielk

    Nielk

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    I didn't know that.
     
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  19. Nielk

    Nielk

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    @aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.
     
    WillowJ, NK17 and Sasha like this.
  20. Nielk

    Nielk

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    Dr. blanco:

    @aboutmecfs: We need to attract funding -- public and private. We need social visibility. We need to pressure policy makers.

    @aboutmecfs: Research is ok, but what about treatments. Follow the example of rituximab

    @aboutmecfs: ME is the best example of patients moving research ahead. The dialogue between science and the rest of society has never been more important
     
    WillowJ, aimossy, NK17 and 3 others like this.

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