My guess is that virtually everyone with chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) has a stake in learning about dysautonomia, getting treated for dysautonomia and/or furthering research into dysautonomia. It’s the way dysautonomia spreads its tentacles through theses two disorders (and allied disorders) that makes Dysautonomia International (DI) and its 6th International conference from June 22-24 in Nashville special. (DI does yearly conferences…)
Formed in 2012, Dysautonomia International has three offices, a 24-hour hotline, a doctor map, holds international conferences yearly and funds research.
The intersections between ME/CFS/FM and the autonomic nervous system are growing and growing. Last year, Julia Newton’s group suggested that chronic sympathetic overactivation may be desensitizing adrenergic receptors that control blood flows in ME/CFS. Carmen Scheibenbogen’s finding that unusual antibody levels may be affecting adrenergic and other receptors suggests the immune and autonomic nervous systems may be working together to cause trouble. The autoantibody findings in POTS suggest that an autoimmune process may be producing profound autonomic and cardiovascular issues in many people with ME/CFS/POTS. Anne Oaklander believes the small nerve fiber issues in the skin of FM patients may be effecting their autonomic nerve fibers elsewhere.
Breaking Down the Silos
Despite the intersections between ME/CFS/FM/POTS and dysautonomia, most patients, doctors and researchers remain in their silos with little knowledge of what’s going on in the diseases. I’m certainly guilty of that. This is the first DI conference of six, after all, that I’m attending. (The Director of NINDS, Dr. Koroshetz, dropped in for the last conference and ended up staying the entire day there.)
The blogs that emerge from the conference will be a small attempt to start bridging the gap. I would love to see future DI and IACFS/ME conferences in the U.S. take place next to each on the calendar other with each featuring sections on the other.
Since Lauren Stiles began Dysautonomia International in 2012, the organization has grown leaps and bounds. In its broad outlines Lauren’s story is a familiar one. After she went from a highly athletic career woman to being barely able to stand in just four days, her long list of diagnoses included ME/CFS, POTS, Addison’s disease, fibromyalgia and hysteria. Ultimately, she was diagnosed with a profound autonomic neuropathy, secondary to an autoimmune disorder.
She emerged from that diagnosis with a commitment to driving more interest in this field. Since 2013, Dysautonomia International has funded almost a million dollars in research projects including some of the exciting autoantibody POTS research. Check out the group’s worldwide dysautonomia doctor map here.
Tweeting the Conference
Saturday and Sunday will feature presentations on a wide variety of topics including POTS, Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Cerebrospinal Fluid Leaks in Dysautonomia, Autoimmune Autonomic Ganglionopathy, Orthostatic Hypotension, Autonomic and Sensory Neuropathies and more. You can find my tweets from the conference here.
Journal Access: I’ve lost my access to scientific journals. If you can help out please let me know at cortrising@gmail.com.
You’re the Man in the Van, Cort! Who would have expected that this unhoused lifestyle would become so very useful to the ME/CFS and FM community. Disautonomia is definitely a key topic and issue. Thank you so much for delving into it, both with this conference and for future gleaning (learning).
I didn’t have problems with dysautonomia, I thought, it in the early years with this illness but sure developed them later. The main downturn for me was post hip replacement surgery. Maybe a relatively big operation like that brings out this weakness in the nervous system—it is a major stressor even if medicated against pain—ir maybe it is the drugs they use during surgery or after, or some lack of oxygen or too much oxygen during surgery, or maybe it was just me. Don’t know.
One of my points here is that even if it doesn’t seem a problem now, it might develop later into this illness for some people. Best to learn what is going on with it and what hinders or helps.
Thanks again!
The man in the van – I like it! Good point on things developing later. For me it was severe chemical sensitivities….
Cecelia – My problems began ( 20 years ago) after a chiropractor twisted and pushed my sacrum and pelvis ( and neck) to “correct” a sore right hip and a sacrum that was visibly slanted on X-ray. Please learn all you can about sacral and pelvic dysfunction. The stability and function of the pelvis is critical to the proper functioning of the entire central nervous system. The skull base( occiput) actually reciprocates with the sacrum in a minute motion that is part of the craniosacral pump that circulates spinal fluid from the brain to the sacral bulb and back.
And also the spinal cord is attached to non-nerve tissue ( filum terminale) that connects the end the of the spinal cord ( at about L-1 or L-2) to the sacrum at S-2 and ultimately to the lining of the tail bones. So, alterations in the position of the sacrum can increase tension on the spinal cord – especially if the filum is composed of connective tissue that is too short or lacks the proper elasticity.
Also, neurosurgical team ( Hansasuta, Tubbs, Oakes) at U. Of Alabama published research showing that 11% of normal cadavers had the filum fused off the midline of the body.
It is appreciated that excessive tension ( and torque??) on the spinal cord can be transferred all the way to the brain stem. So, dysautonomia may be a “logical” consequence of what I mentioned.
Please look at the videos of Jerry Hesch, a doctorate in physical therapy. He is one of a very few experts in pelvic/sacral function.
Yes, I have severe fatigue, immune dysfunction, dysautonomia, and so much more. It is possible that the inherited factor is some connective tissue issue – share almost all Ehlers-Danlos characteristics except obvious hyper mobility. But was it hypermobility in the sacral/pelvic/abdominal connective tissue that caused the hip pain and slanted sacrum in the first place? Just arrived at these thoughts after 20/years of searching.
Hi Cort try sci-hub.nu or sci-hub.tw to get access to research papers. Their domain name changes frequently so check the sci-hub article on wikipedia to get the current domain names. I’ve found every article that I’ve searched for except for a few really old ones.
It’s good to see that this conference includes mast cells. I sure hope that some day ME researchers start looking at them. The idea that mast cells are “an appendix of the immune system” is as old-fashioned as the psychobabble b.s. we are are still dealing with.
Thanks. MCAS is certainly coming up big at the conference.
Thank you for all the tweets from the conference. I appreciate the huge effort required to keep up.
I just read Grubb’s latest review paper on orthostatic intolerance. [1] I didn’t see anything new, but I am extremely disappointed by the blanket recommendation for exercise. Surely it should mention that “exercise” for ME patients with orthostatic intolerance can be harmful.
[1] Ruzieh M, Grubb B; Orthostatic intolerance and
postural tachycardia syndrome: new insights into
pathophysiology and treatment; http://twin.sci-hub.tw/1921afbeec9cea33d8d555ff9e63c40c/ruzieh2018.pdf
Thanks….Conferences are exciting and exhausting at the same time 🙂
Yes, that is disappointing….no blanket recommendations for exercise please!
And thank you Cort. You really are 1 in 100,000,000.
Enjoyed the fast updated tweets. From what you wrote, it wasn’t new to me. But glad that some docs are looking at things from different angles. I have been a bit of a rebel in regard to treatment and my search for WHY. A lot of the things I’ve been thinking are connections are now being explored. Also some of the treatments I’ve questioned are now also being questioned by the docs.
Glad you made the conference and kept us updated. I believe there are very close connections. I stick to what I’ve been saying for years – Autoimmune and inflammation.
Thankfully, I’m better. Hoping to continue to improve.
(Cort, check your emails.)
Issie