Dysautonomia International Conference 2018 (Nashville, TN)

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.

 

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

 

https://twitter.com/user/status/1010526914761633792


https://twitter.com/user/status/1010529030196613125

 

https://twitter.com/user/status/1010531585211453441

 

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

 

Seems to be a bit of exercise promotion going on.

https://twitter.com/user/status/1010556276743507968

 

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. )

 

@JaimeS is also at the conference and tweeting for MEAction.

 

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.

 

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.

 

@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.

 

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.

 

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.

 

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

 

Doesn't exercise improve/help or manage dysautonomia?

 

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.

 

@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.

 

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.

 

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).

 

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