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Dr. DeMeirleir speaking Jan 28/13

Discussion in 'Latest ME/CFS Research' started by Daffodil, Jan 28, 2013.

  1. justy

    justy Senior Member

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    The main thing i can't get my head around is the discussion on autoimmunity. On the one hand he states: (in relation to Gc MAF)


    But on the other hand

    So he seems to be saying that his patients on GcMAF are not showing signs of developing an autoimmune problem, but at the same time that M.E is on a continuum withother autoimmune diseases.

    Am i wrong in thinking this doesnt make sense? It is one of the things that has put me off GcMAF - if i have an autoimmune disease theni wouldnt want to take something that could exacerbate this.

    All the best, Justy.
     
  2. Daffodil

    Daffodil Senior Member

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    i heard recently that gcmaf is showing promise in MS, too.

    maybe there is no such thing as pure autoimmunity..maybe it is some latent viral proteins or some HERV(s) driving the entire thing, in which case, it sort of makes sense that GcMAF can help....
     
  3. beaverfury

    beaverfury beaverfury

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    Thank you, Leachim

    That gives me some direction to go in my own treatment.

    I am seeing a doctor in Western Aus, Perth, who follows KDM's treatment protocols (as far as i can see).

    He wants me to get the most of the tests that Snowathlete got in his recent journey to Dr Meirleir in Belgium.
    I was baulking at this because it amounts to $1400 worth of tests from Germany and Sydney, but it looks like the only way forward for me.

    The tests are - Borrelia, Erlichia, mycoplasmas, Chlamydia pn, Brucella, Ricketssia, Toxoplasma, CD3, CD57, CD4,
    CD8, CD56, UEC/LFT, Coeliac disease screen and lots lots more. Should cover it.

    He's also given me a fructose, fructans, dairy free diet which i havent followed very religiously yet.
     
  4. beaverfury

    beaverfury beaverfury

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    SOC,

    I said exactly the same thing. I wasnt aware of any gut problems at all!

    After i contracted CFS, among other things, i had two years of misery from overheating and a burning feeling all over my skin and torso. My naturopath told me i had dysbiosis and insisted i take glutamine. Within a week the burning and overheating had subsided considerably, and its rarely a problem now.

    I find the harder i work on my gut, with all the tools of diet, supplements, detox, probiotics, the better my general health and energy are. Even though i dont have obvious problems of pain, bloating, diarrhea.

    Wayne posted a good link to http://mindd.org/s/archives.php/107-Disorders.html#spd today.
     
    alex3619 likes this.
  5. SOC

    SOC Moderator and Senior Member

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    Oh Lord, no! Not another complex and poorly understood illness feature that will require educating myself on details of medical science (?) that I never wanted to know! :ill: :cry:
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Didn't want to know or believe either. :oops: No gut symptoms but a DNA based gut test revealed a big mess there.

    Sushi
     
  7. Daffodil

    Daffodil Senior Member

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    i think KDM tests for 20 species of bartonella but not sure
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Whittemore Peterson Institute Hi, Dr. Demeirleir asked us to edit the recording as their are slides and parts of the talk that were recorded that are part of unpublished data for new manuscripts. We hope to have it up after March 1st when one of the papers is published. Thank you for writing. I hope this helps.
     
    SOC likes this.
  9. snowathlete

    snowathlete

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    Only two likes?! Come on everyone, It was funny!
     
  10. snowathlete

    snowathlete

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    When I first got ME I got IBS. Was prescribed a muscle relaxant. Worked. Took maybe ten doses when I got it. Then it stopped. My gut seems fine. Will be interesting to see what my stool test finds, if anything.
     
  11. clive powney

    clive powney Senior Member

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    Thanks mate, I wonder sometimes is it just me and a few others?????
     
  12. Rolo

    Rolo Too ill to twist

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    I've just noticed that the 3 first episodes are re-uploaded with English sub titles!! I suppose the rest will follow


    http://www.youtube.com/user/WetenschapvMEcvsVer/videos

    Enjoy
    Rolo
     
    snowathlete and Valentijn like this.
  13. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands
    I prefer the ME/CFS Alert videos. IMHO, De Meirleir hasn't made much progress since he started saying it's all in the gut.

    There are many ME patients without significant gut problems, and his theories don't explain the incubation period observed in outbreaks of ME.
     

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