Dysautonomia International Virtual Conference (Oct 15th – 18th)
The autonomic nervous system is of great interest in chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and orthostatic intolerance (OI). Studies indicate that low heart rate variability (HRV) in ME/CFS and FM – indicative of an overactive sympathetic nervous system (fight/flight) – is common.
Increased heart rates during sleep may make it difficult to get relaxing sleep. An inability to increase heart rates appropriately during exercise (chronotropic incompetence) contributes to the exercise issues in these diseases. Inappropriately narrowed blood vessels may reduce blood flows to the muscles and brain, causing problems with exercise and cognition. Reduced gut motility may contribute to gut problems. Breathing rates during exercise and otherwise may be affected. The ANS even impacts the immune system – potentially making it less effective at fighting off pathogens.
In short, the autonomic nervous system has the potential to impact many aspects of these diseases.
This year, Dysautonomia International is offering free registration to their four-day conference from Oct 15th-18th! (Note presentation times are EST.)
The keynote presentation – is on “Autonomic Regulation of the Immune System”, something that’s not talked about that much, but could be vital in diseases like ME/CFS. If the ANS is off in ME/CFS, FM and OI – and it is – it’s probably throwing the immune system off as well.
Many interesting talks are being given. Below are some of the ones I’m most interested in. One, by Peter Rowe, is specifically on ME/CFS. (Lauren Stiles, the founder of Dysautonomia International, has long talked of the need for the ME/CFS and dysautonomia fields to break out of their silos and interact. Every year makes it clearer and clearer why this would be fruitful.)
- Gastrointestinal Dismotility in Autonomic Disorders – Dr. Laura Pace – do they contribute to gut flora and leaky gut?
- Small Fiber Neuropathies – Dr. Kamal Chemali – present in FM and ME/CFS and POTS…what is the connection?
- Autoimmune Dysautonomias – Dr. Kamal Chemali – some forms of POTS appear to be autoimmune…apparently other forms of dysautonomia are as well.
- Sex Hormones and Dysautonomia – Dr. Svetlana Blitshteyn – sex hormones are clearly implicated in ME/CFS and FM.
- Autonomic Dysfunction in ME/CFS – Dr. Peter Rowe – the man! Where would we be without him?
- Post-COVID-19 Autonomic Dysfunction – Dr. Mitchell Miglis – reports suggest that the ANS is implicated in post-COVID-19…Interesting!
- Pain Management in Dysautonomia – Dr. Pradeep Chopra – high SNS activity clearly implicated in increased pain sensitivity.
- Expert Q & A: Comorbidities with Dysautonomia: Cause, Consequence, or Coincidence – Dr. Clair Francomano, Dr. Brent Goodman, and Lauren Stiles JD – chronic fatigue syndrome will be in here! Some of these researchers think it is dysautonomia....
- The POTS/OI Workup- What Should We Screen For? – Dr. Brent Goodman – something everyone with ME/CFS/FM should know...
- Autoimmunity in POTS – Dr. Artur Federowski – If it’s in POTS, is it in ME/CFS as well?
- Research Update and Long-Term Outcomes in POTS – Dr. Rafaello Furlan and Dr. Franca Dipaola
Register for the Conference here
Day 1 – Thursday, Oct 15th
- Overview of Autonomic Disorders – Dr. Blair Grubb
- Overview of Orthostatic Intolerance – Dr. Peter Novak
- Overview of Syncopal Disorders – Dr. Robert Sheldon
- Overview of POTS – Dr. Satish Raj
- Autonomic Synucleinopathies: Multiples System Atrophy, Pure Autonomic Failure, and Parkinson’s Disease – Dr. Paola Sandroni
- Rare Autonomic Disoders – Dr. Glen Cook
- Gastrointestinal Dismotility in Autonomic Disorders – Dr. Laura Pace
Day 2 – Friday, Oct 16th
- Autonomic Testing and Skin Biopsies – Dr. Kamal Chemali
- Small Fiber Neuropathies – Dr. Kamal Chemali
- Autoimmune Dysautonomias – Dr. Kamal Chemali
- Sex Hormones and Dysautonomia – Dr. Svetlana Blitshteyn
- Hyperhidrosis – Dr. Malcolm Brock
- Diabetic Autonomic Neuropathies – Dr. Roy Freeman
- Autonomic Regulation of Glucose – Dr. Cyndya Shibao
- Keynote: Autonomic Regulation of the Immune System – Dr. Kevin Tracey
Day 3 – Saturday, Oct 17th
- Autonomic Dysfunction in ME/CFS – Dr. Peter Rowe
- Post-COVID-19 Autonomic Dysfunction – Dr. Mitchell Miglis
- Pain Management in Dysautonomia – Dr. Pradeep Chopra
- Exercise Therapy as a Dysautonomia Management Tool – Dr. Nicole Miranda DPT
- Building Chronic Illness Coping Skills – Elyse Schwartz MSW
- Autoimmune Autonomic Ganglionopathy – Dr. Steven Vernino
- Expert Q & A: Comorbidities with Dysautonomia: Cause, Consequence, or Coincidence – Dr. Clair Francomano, Dr. Brent Goodman, and Lauren Stiles JD
- Award Ceremony presented by Summer Dashe
- Stories of Hope and Recovery – Jacqueline City, Anouhse Husain, and Meredith Brooks
Day 4 – Sunday, Oct 18th
- Pediatric POTS – Dr. Jeffery Boris
- The POTS/OI Workup- What Should We Screen For? – Dr. Brent Goodman
- Autoimmunity in POTS – Dr. Artur Federowski
- Non-Pharmacological Management of POTS – Dr. Tae Chung
- Pharmacological Management of POTS – Dr. Satish Raj
- Research Update and Long-Term Outcomes in POTS – Dr. Rafaello Furlan and Dr. Franca Dipaola
- 15 minute POTS Research Update
- Capitol Hill Advocacy Update – Lauren Stiles JD
- Fireside Chat with Fidji Simo – Head of Facebook App and POTS patient
- Expert Q&A: The Future of Autonomic Research and Closing Remarks
Register for the Conference here
14th Annual (Virtual) Alberta Pain Conference (Oct 16th-18th)
I had trouble copying the agenda, but whoa – is that really a 3 1/2 hour talk (11-1 pm, 1:45-3:15pm) by noted author Norman Doidge M.D. on “The Brain’s Way of Healing: Neuroplastic Approaches to Pain”? That is a nice chunk of time for this most interesting doctor and author.
Some of the other presentations I’m interested in include:
- The anti-inflammatory diet for people with lived experience.
- Targeting pain from many angles.
- Can thoughts influence sensitivity to pain? Reflections on twenty-five years of research on pain catastrophizing.
- Spiritual resilience and the experience of suffering.
- Migraine circa 2020: A gold rush for treatments, A heyday for patients.
- When is a headache not just a headache?
Check out the conference here, and the agenda here, and register for the free conference here.
Thanks Cort! I’m there! Never was able to attend in person, good to get to this virtual way.
Issie
Cort, they run on same days. Can’t do both at once. Since I know some of the presenters from the POTS/Dysautonomia Community, I chose to keep that ticket and cancel the other.
(Dr. GOODMAN has been my doc from Mayo for soooooo many years. Lots of phone messaging. Mayo AZ got me a lot of my DXs, I’m forever grateful for that!)
I hope you or someone else will report on the other Pain conference from Canada.
It was only for reading your comment issie, that I realised there were two different conferences – I’m a bit tired!
Well, I know I have autonomic nervous system dysfunctions because I have to manually regulate everyday functions that would previously be automatically regulated.
I don’t know whether my system has gone wrong or is functioning on the wrong setting. I do sometimes feel completely out of my depth because the autonomic nervous system operates vital organs. However, I appear to have survived so far and just take things one day at a time.
I’m just so grateful to the internet and generous providers of information to enable me to put together my slightly haphazard/flexible DIY healthcare plan.
We all are just taking a day at a time. Keep searching, we are getting more WHYs and finding more of our own “purple bandaids” ?
HANG IN THERE?
The Dysautonomia conference will send registrants a link so they can watch it after the event
The Dysautonomia presentations will be recorded and sent to Registrants later so you can watch them later. This allows you to attend the Pain conference live.