The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Mady Hornig: tea-time at Simmaron and some early gut findings

Discussion in 'General ME/CFS News' started by Sasha, Sep 28, 2015.

  1. Sasha

    Sasha Fine, thank you

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    zzz, Simon, Sidereal and 9 others like this.
  2. Scarecrow

    Scarecrow Revolting Peasant

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    Fascinating comment about Dr Peterson's perceptive subtyping of his patients into classic and atypical.

    Also of interest to the gut enthusiasts who have been Resistant Starching or taking C. butyricum:

     
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  3. alex3619

    alex3619 Senior Member

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    When I was reading this I was thinking it might give a 3D spectrum on subgrouping - severity, duration and typicality.
     
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Is there a video or audio of this presentation (Simmaron tea?) available anywhere online?
     
  5. snowathlete

    snowathlete

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    several interesting things there, worth the read and encouraging. Seems they are steaming ahead with their wor, which is great given our current situation.
     
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  6. msf

    msf Senior Member

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    Looking forward to part 2!
     
  7. msf

    msf Senior Member

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    I knew I didn´t have enough serotonin!
     
  8. Bob

    Bob

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  9. SOC

    SOC

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    [my bolding]

    How does this fit with the strongly held belief of some members that ME is only an autoimmune disease, and that immune down-regulation and chronic infections do not exist in ME?

    I don't quite follow this sentence. Is @Cort saying that classical patients have more immune down-regulation while complex atypical patients have higher (more normal?) levels of the measured immune factors? Or that complex atypical patients have immune up-regulation? Or something else entirely? :confused:

    Here's another sentence I'm having trouble following:
    How so? Does this mean the the immune dysregulation in atypical patients is less clear, or nonexistent, or in the opposite direction to the immune dysregulation in classical patients?

    Does this suggest that the group Dr. Peterson is calling complex atypical may have an autoimmune disease, while those he calls classical have chronic infection leading to immune down-regulation? Two subsets, or even two entirely separate diseases? It seems like it's looking less like different stages of the same illness, although that's not entirely clear to me based on this article.
     
    Last edited: Sep 28, 2015
  10. Sasha

    Sasha Fine, thank you

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    You might want to post a question on Cort's blog, @SOC - he might be more likely to see it there.
     
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  11. Simon

    Simon

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    Wow, hadn't heard that before.
     
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  12. Helen

    Helen Senior Member

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    "That nice concurrence between immune findings in the spinal fluid and in the blood was encouraging, and the group is digging deeper into those CSF samples. Thus far a factor called cortisol binding globulin (CBG) has popped up in protein analyses. "

    Like @Bob I found this interesting. Did it "pop up" as a high or low value? As the CBG has to do with the distribution of cortisol in blood and so many of us seem to have cortisol disturbances with great impact on health it would be interesting to know if it might be of genetic reasons the CBG value isn´t normal in PWME. @Valentijn, can you possibly see anything odd in your n=50 material from 23andme?

    https://en.wikipedia.org/wiki/Transcortin
     
    Last edited: Sep 29, 2015
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  13. Valentijn

    Valentijn Senior Member

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    I've looked at that gene (SERPINA6) before, with the 31 patients I have full data and roughly matched controls for. We're totally normal - more so than the controls even.
     
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  14. jimells

    jimells Senior Member

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    This sounds like happy-talk based on hand waving at the recent CFSAC meeting. Some people watching the meeting thought the NIH rep was sympathetic, while she was mindlessly repeating the party line about lazy researchers won't repeatedly resubmit grant applications and the ones that do are too stupid to fill out the forms properly.
     
  15. Bob

    Bob

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    I thought she was sympathetic and constructive and relatively well-informed. I thought we'd do well to have ME moved to her department. (Can't remember her name.)

    Edit: There were more than one reps from HHS present, and we may be talking about different people. I wasn't impressed with another rep who I remember talking about a lack of applications etc.

    Edit 2: The rep I liked was Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke.
     
    Last edited: Sep 29, 2015
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  16. Bob

    Bob

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    Perhaps it fits the recent autoantibody research too? i.e. adrenergic receptors. (But I don't know how adrenergic receptors would interact with CBG.)
     
    Last edited: Sep 29, 2015
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  17. adreno

    adreno PR activist

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    Well, there is this:

    http://forums.phoenixrising.me/inde...e-corticosteroid-binding-globulin-gene.32332/
     
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  18. Sasha

    Sasha Fine, thank you

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    I think there were two NIH reps - one who favourably impressed me and one who didn't.
     
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  19. Bob

    Bob

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    Yes, we liked Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke.
     
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