Research Summary From Autonomic Symposium

[HopeSprings]

I don't think this has been posted yet? This is a really good summary by Dysautonomia International of research highlights from the symposium. I like it because they made everything very easy to understand.

http://www.dysautonomiainternational.org/pdf/2013ResearchSummary.pdf

[AllAboutPeace]

Thanks for finding and posting this, Naomi !! Great info!!

I'm really curious about the autoimmune connections being made. Can't wait for more info about this...

1. Autoimmune basis for postural tachycardia syndrome (POTS)

D.C. Kem, H. Li, X. Yu, L.E. Okamoto, S.R. Raj Oklahoma University Health Sciences Center and VAMC, Oklahoma City, OK, USA and Vanderbilt University and VAMC, Nashville, TN, USA

[corina]

Thanks Naomi!

[looneymom]

Thank you! Thank you so much for posting this. Can't wait to email this to our cardiologist in Oklahoma City, Ok.

Rachel

[hholmes13]

Thanks for posting! Very good information. I think one of my favorite things to see was this one:

5. Researchers at Mayo Clinic sought to determine whether the deconditioning that is seen in a large

percentage of patients with orthostatic intolerance was the cause of their orthostatic intolerance, or a

consequence of it. The conclusion they reached was that “[m]arkers of deconditioning are not or are only

marginally associated with the orthostatic HR [heart rate] response in patients with OI. This finding

suggests that a high prevalence of deconditioning in these patients is a phenomenon associated with

OI but unlikely to be the primary causative factor of OI. Although OI patients clearly benefit from

physical reconditioning programs, our findings may in part explain the variable and often incomplete

response to this approach.”

I know exercise is good for us, but I hope this will help doctors stop blaming everything on deconditioning!

[HopeSprings]

That was one of my favorites too, HHolmes.

[Chaos]

Thanks for posting Naomi!

I liked this one too:

Mayo Clinic researchers sent follow up surveys to pediatric POTS patients who were seen at the Mayo

Clinic between 2003 and 2010.

18.2% of those who responded reported a complete resolution of theirPOTS symptoms, while 52.8% reported persistent but improved symptoms. The remaining 29% had

no improvement or worsened over time. Male patients were twice as likely to report recovery.

An evaluation of the mental health of all of these patients was similar to the national norm

.

I especially like the part about the mental health being similar to the national norm. Seems like males are also more likely to recover in ME/CFS situations. May go back to that whole thing about the female immune system being so much more complicated than males?

[corina]

hholmes and Naomi, they were my favorites too! Though I LOVE exercizing without the octreotide I just can't do it!

[HopeSprings]

Yup, Chaos I liked that too because it shows the reality of the situation. Past reports made it sound like most people get so much better which left me and others feeling like, what about me, am I just one of those rare cases, why am I not getting better? I think hormones must play a role too in female vs. male.

[HopeSprings]

Oh and Chaos, now that they have repeatedly established that we are no crazier than regular people, I hope all resources will be spent trying to find biological reasons for our poor health.