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…)
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 firstname.lastname@example.org.
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