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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Dr. DeMeirleir speaking Jan 28/13

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

  1. Kati

    Kati Patient in training

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    liquid sky, if the writer is sick like you and me, you'd have a bit more compassion.

    i don't believe there was promises as of when a report would be written.
    SOC likes this.
  2. liquid sky

    liquid sky Senior Member

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    Kati, I thought this was going to be posted by WPI on their site and something I read yesterday said it would be yesterday. I did not realize that it was being done by someone who is sick like us. If that is so, I have not seen it in the postings I have read.

    If a patient is doing this, I thank them and will wait patiently.
  3. Daffodil

    Daffodil Senior Member

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    arent you guys used to waiting yet? i would be surprised if anything to do with CFS was on time! lol

    demeirleir didn't speak about his upcoming paper so there isnt anything confidential to report about
    SOC and justy like this.
  4. Kati

    Kati Patient in training

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    liquid sky the truth is i don't know if it will be a patient or an employee or a volunteer who will write up a report. However, in all eventualities, organizing and hosting a conference is a stressful and exhausting time, at best.

    I am also impatient about the next paper to be published, but in the grand scheme of things, it will not change my day to day life.


    Daffodil indeed, waiting is my speciality... i am learning not to wait so much.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Valentijn and Kati like this.
  6. Kati

    Kati Patient in training

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  7. Forebearance

    Forebearance Senior Member

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    Have you been chewing worms, Firestormm? ;-)
    Sushi likes this.
  8. Firestormm

    Firestormm Senior Member

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    Nah. Me socks :)
  9. liquid sky

    liquid sky Senior Member

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    Thanks. Sushi.

    "Dr. De Meirleir concluded his talk with a detailed slide describing the various pathways that are disrupted in ME and several other autoimmune diseases. He spoke about a continuum of autoimmune diseases including ME, lupus, RA, type 1 diabetes, and remitting MS that involve a dysregulation of two important immunological pathways, 2’-5’OA synthetase and Th1/Th2 immunity."

    Sounding more like autoimmune pathology. @ kati, this will affect my day to day life. I have a decision to make soon and wanted to research what demeirleir had to say. This paragraph may help a little.

    "I am also impatient about the next paper to be published, but in the grand scheme of things, it will not change my day to day life." quote by kati

    I'm not sure why the font changed. Guess it's from the quote.
    Valentijn likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    It's great to see how current he's staying with a variety of ME/CFS research from around the world.
  11. Leachim

    Leachim

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    KDM's model for it, as I've learned from other presentations and some bits that he has given to me at the consultations, is that there are several predisposing factors that leads to the vulnerability for certain infections. Some are genetic, at my last consultation he talked about a genetically based weakness in the Th1 immunity, which then would lead to greater risk for persistency in infections like EBV, bartonella and borrelia, and a greater risk for the Th1->Th2 shift that usually is a part of ME. But he has also talked a lot about gut dysbiosis as a cause of disruption of the immune system - dysbiosis is almost universally present in ME patients, and he thinks the dysbiosis comes first, causing what he calls a "pre-ME"-state. I think they do some research at his university about the gut flora and it's connection to conditions like ADHD and autism. Due to the immune dysfunctions the body can't get rid of certain infections well enough, and dormant viruses like herpes viruses get reactivated much more often than normal. The infections disrupt the immune system even more (pathogens often have specific mechanisms for doing just that), and at some point the load is so big that there's an ME outbreak. It makes total sense that an infection with something like EBV, bartonella or borrelia could be the tipping point since those are pathogens that are especially cumbersome for the immune system.

    I guess we'll have to wait another month for the new info on auto-immunity until the article is published, but I'm also anxious to see this presentation since I think it's been a few years since KDM has summarized his model and his treatment approach in a lecture (AFAIK). My guess is that his treatment approach isn't going to change very much because of this auto-immune mechanism, it's probably still the complex of immune dysfunction (including gut dysbiosis) and persistent infections that needs to be treated to reduce the auto-immune activity. Medicine hasn't come very far on the road to finding ways to stop auto-immunity, maybe approaches like KDM's that focus on the immune dysfunctions that might be what triggers the auto-immunity is a way forward?
    dece, beaverfury and Daffodil like this.
  12. Daffodil

    Daffodil Senior Member

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    i agree that the treatment approaches won't change that soon, since KDM has probably suspected auto-immunity for quite some time. still, i do hear rumors of new treatments coming at some point.

    wondre if autism will be categorized as an autoimmune disease as well.
  13. SOC

    SOC Moderator and Senior Member

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    Leachim, your explanation makes sense to me. The only thing in it that I still haven't sorted out for myself is the whole gut thing. I am one of the few fortunate PWME with no GI problems. My digestive system is probably the only system that doesn't give me trouble. :) So if I have a gut dysbiosis, it would have to be something that doesn't give noticeable symptoms -- which is possible.

    The more I look at genetic immune abnormality, the more likely it looks to be an issue for me. On the same side of the family I have Hodgkin's Lymphoma in at least 3 generations, a cousin who had severe (quad) paralysis from polio, and an overall shortened lifespan by about 10 years in the family. All would fit with a weak immune system.
  14. Daffodil

    Daffodil Senior Member

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    SOC.....i think that we have GI issues even if we have no symptoms, but i am not sure...

    i wonder why autoimmune diseases are on the rise. they used to be a anomaly and now every other person i meet seems to have one!
  15. snowathlete

    snowathlete

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    He has done some videos that i think are recent on youtube and on a dutch (i think) site, and these might talk about his current model, but he speaks in dutch in them, so not much use to me...

    Anyone speak Dutch? If you do and want to let us know what he says then i can try and locate which site they were on.
  16. clive powney

    clive powney Senior Member

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    I played the video twice and it was double dutch to me.
    snowathlete and cigana like this.
  17. SOC

    SOC Moderator and Senior Member

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    Probably. :rolleyes: Like I need another thing going wrong. ;) Seriously, though, with so much immune stuff going on in the gut, it's probably guaranteed there's something not working right there, it's just not manifesting in overt symptoms in people like me.

    Some of it may be as simple as they've only learned about autoimmune diseases fairly recently, so people weren't diagnosed with it, even though they had it -- so some of the increase could be due simply to increased diagnosis.
  18. Daffodil

    Daffodil Senior Member

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    thats true.

    i think 80% of our lymph tissue is in the gut....or something?

    my friend has reiter's syndrome which he developed immediately after an unprotected sexual encounter some 25 yrs ago. he also has severe IBS and has bowel movements / diarrhea several times a day. i often wondered if this wasnt due to the inflammation cause by the reiter's syndrome, but now i wonder if the reiter's syndrome was caused by a pre-existing gut inflammatory situation!
  19. Leachim

    Leachim

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    I have never had any GI symptoms and have always had a ”steel stomach” (don't know if that's an expression i english, but it is in swedish!). Yet my fecal analysis showed a large overgrowth of prevotella, too little of lactobacillus and almost no bifidobacteria (which some call THE gut bacteria of health). Prevotella is present in the normal flora, and part of the population has quite a proportion, but not that much and it needs to be in balance with other bacteria as I've understood it. Prevotella produces a lot of hydrogen sulfide, amongst other things.
  20. sprankel

    sprankel

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    The videos are on this site and will be translated in english, but it will take some time.
    There will be some new videos too.
    snowathlete, Valentijn and Nico like this.

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