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Dysautonomia International Conference 2018 (Nashville, TN)

Discussion in 'General ME/CFS News' started by Sasha, Jun 23, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Merged threads - MEAction are tweeting from the conference.

    Here's their Twitter thing:

    https://twitter.com/MEActNet

    This is some big dysautonomia conference and might be very interesting.
     
    Last edited by a moderator: Jun 24, 2018
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    It started two hours ago and Beth Mazur is tweeting for #MEAction (I think).
     
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  3. Sasha

    Sasha Senior Member (Voting Rights)

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  4. Sasha

    Sasha Senior Member (Voting Rights)

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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    I can't keep this Twitter posting up, but it's worth reading. Some interesting stuff that I didn't know about...
     
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  6. BurnA

    BurnA Senior Member (Voting Rights)

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    Seems to be a bit of exercise promotion going on.

     
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  7. Webdog

    Webdog Senior Member (Voting Rights)

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    The doctor's "motivational interviewing" failed to elicit patient "change talk". Change talk has been shown to be predictive of behavior change.

    (I only burst out laughing once while typing that. :laugh:)

    talk.png
     
    Last edited: Jun 23, 2018
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  8. Joh

    Joh Senior Member (Voting Rights)

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    @JaimeS is also at the conference and tweeting for MEAction. :)
     
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  9. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    The Dysautonomia International Conference 2018 is taking place this weekend (June 23-24) in Nashville, TN. Cort Johnson and MEAction have been sending out live tweets from the conference. There has been a lot of exciting information related to POTS, EDS, MCAS, and Fibromyalgia. As we know, all of these conditions relate to ME/CFS. I am thankful MEAction is there to visibly represent ME/CFS. Dr. Kaufman from the Centers of Complex Diseases is also in attendance. If you would like to follow the conference on Twitter, search the hashtag #DysConf2018.

    Hopefully Dysautonomia International will post video footage of all the talks soon after the conference as they have done in the past here: http://www.dysautonomiainternational.org/page.php?ID=151

    ETA: If this post looks a bit out of place in this thread, it's because two threads were merged.
     
    Last edited: Jun 24, 2018
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  10. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yes, I'm exceedhergrasp1 on Twitter. :) It's great for breakout sessions because Beth can be in one, and I can be in the other.
     
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  11. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    @JaimeS - Any sense as to why ME/CFS researchers are not presenting at this conference? Or, is one on the agenda? I haven't been able to find the list of speakers. With so much overlap between these conditions, it would be awesome if Dysautonomia International formally brought ME/CFS into the presentation line-up.
     
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  12. strategist

    strategist Senior Member (Voting Rights)

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    Reading this one gets the impression that ME is primarily a dysautonomia.

    One the tweets said that adrenergic antibodies are found in almost all POTS patients.
     
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  13. Milo

    Milo Senior Member (Voting Rights)

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    Thank you so much to the attendees including @JaimeS. i have a question for you: have you heard the concept of ‘Central Sensitization Syndrome’ any time through the day from the experts on Saturday?

    i am sorry to ask again, it’s just that an entire community of patients is directly affected by this kind of ideology.
     
    Last edited: Jun 24, 2018
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  14. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    Yes, Carmen Scheibenbogen would be a great addition to their speaker line up.
     
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  15. Mij

    Mij Senior Member (Voting Rights)

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    Doesn't exercise improve/help or manage dysautonomia?
     
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  16. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    There appears to have been one speaker from Mayo advocating for this. It's one of the reasons more collaboration with the ME/CFS community would be good because we are POTS patients too, but certainly do not benefit from exercise. It's strange that a professional in the field would not even mention this huge subset and make a disclaimer about such remarks as exercise is not universally good for all POTS patients. But then, Mayo has a reputation in how it behaviorally treats ME/CFS.
     
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  17. Mij

    Mij Senior Member (Voting Rights)

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    @Diwi9 I am able to do moderate exercises but it certainly isn't "improving or helping" my M.E. I'm walking a very fine line not to get PEM.
     
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  18. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    So far, it seems that Klimas is the researcher who has looked into our aerobic threshold issue more than anyone other than Workwell. I exercise a bit by lifting weights while seated on the floor during my best time of day. Recumbent bike or otherwise remaining supine, the problem is not just being upright for ME patients, we have additional consequences of having our heart rate spike, much more so than other POTS patients.
     
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  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Part of why we're here is to help make some of these connections. However, we're not the only ME folk at the conference: so far I've run into Dr Kaufman (Silicon Valley physician) and Dr Friedberg (IACFS/ME). My impression is that we should be here in force.

    Not once.

    There are mentions of talk therapy being important at the end of a number of lectures. But the point seems to be that having a chronic illness can be really tough and people need support, not that "beliefs maintain disease".

    Interestingly, no speaker has harped on about disbelief in ANS dysfunction, but the patients talk about it a lot. It's not like POTS or NMS is a physician's first guess, so they've been through the veritable wringer, and most of them have been accused of malingering at some point (or still are, by family members and friends who don't understand their disease).
     
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  20. Sasha

    Sasha Senior Member (Voting Rights)

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    Will there be any kind of write-up about the conference, @JaimeS? Your tweets (and Beth's) have been very interesting.
     
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