“Dysautonomias 101: More Than Just POTS”

Sunday, March 17, 2024, 4 p.m. Eastern Time

 
Peter Cariani, Ph.D.

 
Hayla Sluss, Ph.D

“Dysautonomias” refers to the generic term encompassing all disorders of the autonomic nervous system. In this edition of Sunday Conversations, Peter Cariani, Ph.D., gave a brief overview of the autonomic nervous system and what can go wrong. He also described the role of dysautonomias in ME/CFS, FM, and other chronic conditions, what causes these conditions to be self-sustaining, what medical specialties treat dysautonomias, and added his own thoughts about diagnosis and treatment. Hayla Sluss, Ph.D., presented symptoms and accommodations.

Bios: Peter Cariani (B.S. MIT biology; M.S., Ph.D. SUNY-Binghamton, systems science) is a recently retired auditory and systems neuroscience researcher and teacher. His research has mainly involved understanding the neural codes that mediate perception of pitch, consonance, harmony, and rhythm. Over the last two decades he has taught undergraduate and graduate courses related to music perception and cognition, auditory neuroscience, and the neurobiology of consciousness at various Boston-area institutions (Tufts, Harvard, MIT, Boston Conservatory/Berklee, Boston University). He is currently co-authoring two books: a clinician’s guide to music therapy and an outline of a new theory of brain function based on temporal codes. Personal website: www.petercariani.com

Peter has two adult children who have been diagnosed with ME/CFS, and consequently has been studying the ME/CFS literature to help them find appropriate medical care and to try to understand the disease from a systems perspective. He is currently serving as a parent/caregiver person-with-lived-experience on the current NIH task force to formulate a roadmap for future ME/CFS research.

Hayla Sluss (Ph.D. molecular medicine) is a researcher and Assistant Professor at UMass Chan Medical School, and a Board member of MassME.

Materials from the presentation:

• Slides from the presentation
• Full recording (This version contains chapter headings for easier viewing)

Exerpted resources from the slides:

• Solve M.E. (Solve ME/CFS Initiative) https://solvecfs.org
• Open Medicine Foundation https://www.omf.ngo
• Dysautonomia International http://dysautonomiainternational.org
• American Autonomic Society https://americanautonomicsociety.org/resources/
• International Assoc. for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) https://www.iacfsme.org
• See their ME/CFS: A Primer for Clinical Practitioners(2014, 50 pp) https://growthzonecmsprodeastus.azureedge.net/sites/451/2020/10/Primer_Post_2014_conference-8204127c-4e30-49b9-8ce5-39387edf4b99.pdf
• Centers for DIsease Control & Prevention ME/CFS webpage https://www.cdc.gov/me-cfs/index.html
• NIH Roadmap on ME/CFS Research https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group
  • 4-hour webinars on Nervous System, Immune System, Metabolism, Genetics, Chronic Infections, Physiology, Lesser Studied Pathologies (e.g. connective tissue, mast cells, platelets) https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/
• YouTube videos on Dysautonomia by practicing clinicians
• There are many primers and short videos by clinicians explaining a large array of issues related to dysautonomias. Search under “dysautonomia”, POTS, ME/CFS, etc. and whatever aspect, symptom, diagnostic test, treatment you want to hear more about. This is often the fastest way of finding basic information. e.g. Drs. Hakim & Farhad on Autonomic Dysfunction, Dr. Rowe Managing Life with Autonomic Symptoms; Dr. Maitland- Mast Cell Activation Syndrome: More than “just allergies.” Dr. Systrom on PEM.
  • Wikipedia https://www.wikipedia.org Reasonable, general source of basic information.
  • PubMed literature search. https://www.ncbi.nlm.nih.gov/pumed NIH sponsored biomedical literature search engine/database that includes abstracts of papers, even those behind paywalls. Good for more in-depth and specific information.