Dysautonomia International Conference 2018 (Nashville, TN)

[JaimeS]

Doesn't exercise improve/help or manage dysautonomia?

Before yesterday, I would have said what separates us from primarily OI patients is PEM. They have a lot of the same multi-system involvement we do, even if their hallmark symptom are issues with changing position. POTS is often post-viral (first I've heard of that).

But from my interactions here it's pretty clear that many do have PEM. Or, from another perspective, a great deal of ME patients have been handed a label of POTS.

A handful are aware of ME and have been diagnosed with it at some point.

And of course there's the overlap: some studies estimate as many as 92% of ME patients also have OI.

Exercise apparently is very difficult for people with POTS. The only lecture so far that mentioned it talked about trying recumbent exercise for patients. I thought it was an interesting thought (for people with POTS, not ME). But I think Beth was in a conference where they were pushing exercise a lot more, which is a real problem... especially considering the degree of overlap I'm seeing. If we're using PEM to define ME, then quite a few people here have POTS and ME, and exercise has the potential for great harm. It's worrying.

 

[JaimeS]

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

Yes! Julia is working hard to collate them, and she and Layla are putting a rough outline together.

 

[JaimeS]

we have additional consequences of having our heart rate spike, much more so than other POTS patients.

I believe POTS patients DO have this problem -- in adrenergic POTS. There was talk of slow adrenaline clearance being a huge issue, and that being followed by a 'crash'.

At this point I want POTS + no PEM; ME + POTS; and ME only in a room and start firing questions at groups of people!

 

[Diwi9]

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.

I really wanted to go, but wasn't well enough a month ago to make plans. I have a local friend with ME who wants to attend next year together. Please tell me that you and Beth are wearing MEAction t-shirts! I share your suspicion that there are POTS patients who are ME, but only diagnosed POTS...so awareness and education are key.

Yesterday, Dysautonomia International sent out a tweet about Cort Johnson being in attendance. Hopefully he is also discussing the ME/CFS angle with organizers. Perhaps we don't need to be accepted, we just need find a seat at the "grown-up's" table and take it because we do belong with this group too

 

[Hoopoe]

Interestingly one tweet also said that POTS patients tend to be on gluten free diets, and that this might reflect poor carbohydrate tollerance more than a gluten sensitivity.

POTS patients also have abnormal glucose tollerance according to another tweet. I keep saying that there is also something wrong with glucose regulation in the broader ME/CFS population (sometimes at least).

 

[Hoopoe]

Exercise apparently is very difficult for people with POTS. The only lecture so far that mentioned it talked about trying recumbent exercise for patients. I thought it was an interesting thought (for people with POTS, not ME). But I think Beth was in a conference where they were pushing exercise a lot more, which is a real problem... especially considering the degree of overlap I'm seeing. If we're using PEM to define ME, then quite a few people here have POTS and ME, and exercise has the potential for great harm. It's worrying.

Sounds like the dysautonomia people could learn a thing from the ME/CFS community .

 

[JaimeS]

Please tell me that you and Beth are wearing MEAction t-shirts!

Beth wore one yesterday, and we are both wearing our gold shoe pins throughout!

POTS patients tend to be on gluten free diets, and that this might reflect poor carbohydrate tollerance more than a gluten sensitivity.

My neuro symptoms flare on high carbs. But this may not be the case for everyone, or may not be the case in every 'stage' of ME. Early in the disease, for example, I had hypoglycemic episodes and needed to keep sugary things in the house... this shifted over time until I could no longer tolerance carbs at all.

Sounds like the dysautonomia people could learn a thing from the ME/CFS community .

And vice-versa!

I've been encouraged by how many clinicians are here and eager to learn about these diseases. I've encountered multiple clinicians who are eager to learn about ME and a few that, after hearing me discuss ME and PEM, have become aware that we're a group they have encountered in clinic. When I talk, I'm focusing on exercise intolerance and PEM because I do feel that's our 'line in the sand'.

 

[searcher]

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.

I heard a reference to the concept at a chronic pain session that I attended yesterday but not in any other sessions. I agree with @JaimeS that when CBT and/or talk therapy has been brought up, it has always been in the context of helping people cope with having one or more life-changing chronic diseases.

(Edit to add: this is Beth for those who don't know me )

 

[Diwi9]

@JaimeS - If you get a chance to speak with an organizer, can you find out when they expect the videos of this conference to be posted and let us know? These talks clearly have a lot depth and information to digest. I hope it helps many people get to the bottom of their symptoms and can lead to better treatment options.

 

[JaimeS]

@JaimeS - If you get a chance to speak with an organizer, can you find out when they expect the videos of this conference to be posted and let us know? These talks clearly have a lot depth and information to digest. I hope it helps many people get to the bottom of their symptoms and can lead to better treatment options.

Lauren Stiles has told me that there will not be videos of the talks. Powerpoint slides, however, should be available.

 

[Diwi9]

Lauren Stiles has told me that there will not be videos of the talks. Powerpoint slides, however, should be available.

Wow...that's a huge disappointment, they were so good in the past. Thank you, however, for the information!

 

[JaimeS]

Wow...that's a huge disappointment, they were so good in the past. Thank you, however, for the information!

Maybe from the first day? Initially, they were telling us to not even livetweet Day 2. I talked to Stiles and she said, "it's really fine; we just didn't want anyone videotaping today." It's not like the tenor of the talks I have attended have changed in any meaningful or observable way. We probably won't know why a decision like this was made w/o being on the front lines of the conference planning.

 

[JaimeS]

LOLOLOL



....apparently he was Tweeting so fast Twitter thought he was a bot.

 

[Andy]

....apparently he was Tweeting so fast Twitter thought he was a bot.

Not that he's a troll????

Sorry, couldn't resist.

 

[Diwi9]

Maybe from the first day? Initially, they were telling us to not even livetweet Day 2. I talked to Stiles and she said, "it's really fine; we just didn't want anyone videotaping today." It's not like the tenor of the talks I have attended have changed in any meaningful or observable way. We probably won't know why a decision like this was made w/o being on the front lines of the conference planning.

Hopefully there will be some video. It sounds like many of the speakers have publications lined up, so that could be another reason. The PowerPoints will help to sort this out and then I'll have everyone's names too, so can start looking for published papers. I hope you do okay from all this energy at the conference...you've taken on a very busy post with MEAction. I'm sure the Norwegians will publish next week just to make sure you can't slow down

 

[JaimeS]

I'm sure the Norwegians will publish next week just to make sure you can't slow down

lolollol

The physician Q&A is what I'm doing right now. Pretty interesting. Want to corner the neurologist to examine his claim that psychogenic disorders have clear and objective (positive) signs. That sounds absolutely nonsensical on the face of it.

 

[Rossy191276]

Hi @JaimeS . Thank you for your attendance of this conference... I am wondering if muscle weakness/atrophy is ever mentioned as part of dysautonomia?

 

[JaimeS]

Hi @JaimeS . Thank you for your attendance of this conference... I am wondering if muscle weakness/atrophy is ever mentioned as part of dysautonomia?

Gooood question. Not as such. People were talking about laxity -- as in EDS. People spoke about tremor and seizure. But generalized weakness, not so much.

 

[Mithriel]

In the days before CFS and the emphasis on fatigue, there were imaging brain studies which showed the parts of the brain which controlled homeostasis were damaged in ME. This was seen as congruent with an enteroviral infection.

I think that POTS could be a primary disease but also a symptom of damage from a separate disease process. The treatment would be different for each. (One reason for thinking this is that people with ME experience dysautonomia while they are moderately affected and still very active so not deconditioned at all. It is suggested it is because we spend too much time lying down but that is not correct)

Many people get fatigued after exercise but it is not the PEM of ME where activity can cause problems with thought, even when there is no problem with movement, and mental exercise can cause paralysis of the legs.

 

[JaimeS]

Want to corner the neurologist to examine his claim that psychogenic disorders have clear and objective (positive) signs. That sounds absolutely nonsensical on the face of it.

Beth and I queried him on this. "The parts of the brain associated with voluntary actions light up on fMRI," was his answer. He told the usual exceptional stories about hysterical blindness. Beth and I mentioned that there were lots of disorders that were sworn to be psychosomatic until we understood how to detect or measure the effect of the disease, and then (after years or even decades) it's entered into the textbooks as a fully-embodied disorder.

He also referenced hysterical epilepsy -- the kind of epilepsy where a seizure does not show up on instruments.

I spoke to someone the evening before who'd been diagnosed with this. She has dislocated her shoulder seizing. She was threatened with institutionalization. Her doctor pressed her to 'admit' that she was so unhappy in her marriage (or wanted her husband's attention so badly) that she was faking her seizures. They tried to force her into a frame that they understood -- that she must be deeply troubled. (For the record, she did not seem at all troubled.)

I guess I'm saying that it's not just that ME can be psychologized. It's that every time a doctor with a certain frame of mind encounters something he does not understand -- especially if it's neurological -- it's labeled psychosomatic. It's a pattern where the doctor can't admit they don't know what's happening and fields the patient to psych to avoid the cognitive dissonance and/or pass the buck to the patient to fix a problem over which it's implied they should have control.