Dysautonomia International 2018 Conference

[Diwi9]

No one seems to have posted about the talks happening at the Dysautonomia International Conference this weekend (June 23-24) in Nashville, TN. @Cort and MEAction have been posting live updates on Twitter from the conference. There is a ton of new information being discussed about POTS, EDS, Fibromyalgia, and MCAS...all of which appear to tie into ME/CFS. If you have a Twitter account, look for the hashtag #DysConf2018. I'm sure Cort will post a piece or two after the conference, but so far the updates have been pretty exciting.

Dysautonomia International has posted videos of their prior conferences here in the past, so hopefully they will do so again this year sometime after it wraps up: http://www.dysautonomiainternational.org/page.php?ID=151

 

[Diwi9]

Specifically, interesting findings about cerebral spinal fluid leaks and the 8 major symptoms with this closely overlapping with POTS. Some findings linked to lumbar punctures and whiplash. Also, more information linking autoimmune factors with POTS. Some researchers are stating that low carb diets are preferred for POTS as there seems to be a problem with the utilization of carbs. I am writing this all based on second-hand tweets, so look forward to the actual video footage of the talks to fill in all the blanks.

 

[Sushi]

If you have a Twitter account, look for the hashtag #DysConf2018.

Or if you don't have a Twitter account! Anyone can search Twitter. I have found this to be a very interesting conference in the past.

 

[Diwi9]

I'm a bit curious why Dysautonomia International is courting researchers in the field of POTS, FM, MCAS, and EDS...yet there are no presentations by ME/CFS researchers? Maybe they did invite some, maybe not? There seems to be so much overlap that the time has come for collaboration. Maybe ME/CFS is still the "red-head stepchild" (no offense intended for gingers or stepchildren!).

 

[Sushi]

I'm a bit curious why Dysautonomia International is courting researchers in the field of POTS, FM, MCAS, and EDS...yet there are no presentations by ME/CFS researchers? Maybe they did invite some, maybe not? There seems to be so much overlap that the time has come for collaboration. Maybe ME/CFS is still the "red-head stepchild" (no offense intended for gingers or stepchildren!).

My Dysautonomia specialist, who always went to these conferences, privately said that he thought that many or most dysautonomia patients would be shown to have ME/CFS, but it was not a common opinion (at least 10 years ago) among the dys specialists--at least as I remember it. It is too bad that they are not collaborating.

 

[Diwi9]

My Dysautonomia specialist, who always went to these conferences, privately said that he thought that many or most dysautonomia patients would be shown to have ME/CFS, but it was not a common opinion (at least 10 years ago) among the dys specialists--at least as I remember it. It is too bad that they are not collaborating.

Yes, one speaker from Mayo was talking about behavioral interventions for POTS (i.e. exercise). It's like some specialists just compartmentalize patient experiences that don't fit their pre-conceived notions. One day, it will all come together and be sorted appropriately. For now, we have to keep following the research and sort it out ourselves.

 

[Diwi9]

I should have mentioned that Dr. Kaufman is attending the conference. I know many of his patients are on PR (@Gingergrrl and @Learner1). It's good to know the Centers for Complex Diseases is staying on top of an interdisciplinary approach to our illness.

 

[Gingergrrl]

Or if you don't have a Twitter account! Anyone can search Twitter. I have found this to be a very interesting conference in the past.

As stupid as this will sound, I never knew that and have never been a member of Twitter. How would you search for something without being a member? I assumed you would need to log-in (similar to facebook) or is there no log-in process? <--- (for myself).

Maybe ME/CFS is still the "red-head stepchild" (no offense intended for gingers or stepchildren!).

This sentence made me smile b/c "ginger" and "stepchildren" are a huge part of my life (even though I know this is not what you meant)!

One day, it will all come together and be sorted appropriately.

I cannot wait for that day although I feel like it will not be in my lifetime.

I should have mentioned that Dr. Kaufman is attending the conference. I know many of his patients are on PR (@Gingergrrl and @Learner1). It's good to know the Centers for Complex Diseases is staying on top of an interdisciplinary approach to our illness.

Dr. Kaufman and CFCD definitely stay on top of all the new research so they can assess each patient individually (within ME/CFS, POTS, MCAS, Fibro, Lyme, other immune or autoimmune disorders, etc) and understand that no two people are ever the same. It is the most "non-cookie cutter" approach I have ever seen. The Dysautonomia conference looks amazing and some day, I wish I could attend.

 

[Sushi]

I never knew that and have never been a member of Twitter. How would you search for something without being a member? I assumed you would need to log-in (similar to facebook) or is there no log-in process? <--- (for myself).

Just do a Google search. Try these: twitter #DysConf2018 or twitter cort johnson. There are probably easier ways to search but these work. I don't have a twitter account either but I often search it. Janet Dafoe posts a lot when anything is going on, so that can be an interesting search.

 

[Diwi9]

So the final update from the conference is that some videos and PowerPoints of it will be posted (yay!). The conference next year will be in Philadelphia.

The amount of information coming out of this conference was incredible and the message was very strong in terms of autoimmunity. It feels like ME/CFS and POTS overlap in many significant ways, but research in each domain seems to focus on different aspects (i.e. no sleep studies in POTS). I cannot help but feel that there are many people diagnosed POTS who are in fact ME/CFS.

Much gratitude is due to @Cort for his attendance and diligent tweets through out. The same can be said for MEAction (Beth and Jaime)...so glad that @JaimeS has an official position with MEAction...she is already hard at work. We have some very good people on our side making our presence known in the wider medical and political realms...best of all, these people also make themselves accessible to patients...and are patients.

Folks, we are not alone. No matter how crappy your day/week/month have been...there is movement and we are being seen.

 

[Sushi]

but research in each domain seems to focus on different aspects (i.e. no sleep studies in POTS). I cannot help but feel that there are many people diagnosed POTS who are in fact ME/CFS.

Interesting. The doctor most qualified in my city to work with POTS is my cardiologist/electrophysiologist and she had me do a sleep study--but that is one individual doctor. She also recognized that I have ME/CFS and even asked if I'd talk to one of her other patients with ME/CFS. (after complying with all the privacy regulations)

he same can be said for MEAction (Beth and Jaime)...so glad that @JaimeS has an official position with MEAction...she is already hard at work.

Folks, we are not alone. No matter how crappy your day/week/month have been...there is movement and we are being seen.

 

[Gingergrrl]

Just do a Google search. Try these: twitter #DysConf2018 or twitter cort johnson. There are probably easier ways to search but these work. I don't have a twitter account either but I often search it. Janet Dafoe posts a lot when anything is going on, so that can be an interesting search.

Thanks and I'd always assumed that you had to have an account and log in to Twitter in order to search it (or read a link that someone else posted).

The conference next year will be in Philadelphia.

Bugger. I was hoping it would be in Los Angeles. Oh well.

The amount of information coming out of this conference was incredible and the message was very strong in terms of autoimmunity.

This seems to be the consensus, and the future of research, that a great percentage of Dysautonomia has an autoimmune cause or correlation. This is my greatest personal interest and experience (how immunotherapy treatments affect autonomic problems).

 

[Sita505]

Yes, one speaker from Mayo was talking about behavioral interventions for POTS (i.e. exercise).

I don't have a diagnosis yet, live in ABQ NM and have friends urging me to go to Mayo for a diagnosis. When I hear about a Mayo doc operating in this manner, it scares me, and makes me rethink about ever going to that facility.

 

[Gingergrrl]

I don't have a diagnosis yet, live in ABQ NM and have friends urging me to go to Mayo for a diagnosis. When I hear about a Mayo doc operating in this manner, it scares me, and makes me rethink about ever going to that facility.

I would NOT go to Mayo for ME/CFS or POTS and will let others more eloquent and knowledgeable than myself explain why. Although Mayo's lab is excellent for obscure blood tests.

 

[Diwi9]

Thanks and I'd always assumed that you had to have an account and log in to Twitter in order to search it (or read a link that someone else posted).



Bugger. I was hoping it would be in Los Angeles. Oh well.



This seems to be the consensus, and the future of research, that a great percentage of Dysautonomia has an autoimmune cause or correlation. This is my greatest personal interest and experience (how immunotherapy treatments affect autonomic problems).

I was rooting for Denver or Dallas! Awe shucks.

 

[Diwi9]

I don't have a diagnosis yet, live in ABQ NM and have friends urging me to go to Mayo for a diagnosis. When I hear about a Mayo doc operating in this manner, it scares me, and makes me rethink about ever going to that facility.

I think you can tell that I'm also in the 505. I will PM you.

 

[Diwi9]

Interesting. The doctor most qualified in my city to work with POTS is my cardiologist/electrophysiologist and she had me do a sleep study--but that is one individual doctor.

I should have clarified...there haven't been formal published studies examining sleep problems in POTS, an area that has and is being studied in ME/CFS. Of course, with ME/CFS, I would love to see many more studies looking at our cardiovascular problems. Something tells me these two diseases have more in common than not.

P.S. PM me if you know any POTS knowledgeable neurologists in the area...I haven't heard of one and do not want to subject myself to another dope (oops...did I just say that? Yes...yes, I did!).

 

[Diwi9]

P.S. @Gingergrrl - All of my best friends have always been red heads...no joke! I was pleased when 23&Me let me know I'm a carrier!

 

[Sushi]

I would love to see many more studies looking at our cardiovascular problems. Something tells me these two diseases have more in common than not.

I think so too as a number of cardiac problems involve the autonomic nervous system--like Afib--which I have. The head of the heart failure unit at Vanderbilt said that she also agreed that the autonomic nervous system was involved in heart rhythm problems.

P.S. PM me if you know any POTS knowledgeable neurologists in the area...I haven't heard of one and do not want to subject myself to another dope (oops...did I just say that? Yes...yes, I did!).

When the word appropriate....! Well, I asked my cardio for other doctors in the area who were knowledgeable about POTS and she said that, unfortunately, she was the only one she knew of and she was not really an expert--just knows the basics by her own admission.

 

[Diwi9]

When the word appropriate....! Well, I asked my cardio for other doctors in the area who were knowledgeable about POTS and she said that, unfortunately, she was the only one she knew of and she was not really an expert--just knows the basics by her own admission.

Yes, Dr. Bonilla told me to see a local neurologist to follow up on my POTS...I literally laughed when he said it and told him everyone I know locally who is treated for POTS travels out-of-state. Nothing out-of-state is in-network for me. Right now, Dr. Chheda is treating me. I'd love to have a full TTT done. Right now the only affordable and readily accessible test is our well-known altitude test...best of all, it's free!