Learning about ME at the Dysautonomia Conference

#MEAction sent two representatives, Beth Mazur and Jaime Seltzer, to attend the 2018 Dysautonomia International Conference in Nashville last month. This was an opportunity for our community to join forces and gain insight regarding the commonalities in triggers, symptoms, diagnoses, and methods of treatment between ME and dysautonomia.
Dysautonomia refers to diseases that affect the autonomic nervous system (ANS). The ANS is responsible for all involuntary actions of the body such as breathing, heart rate, blood pressure, pupil dilation. A person with a compromised ANS can have symptoms such as dizziness or fainting upon standing up (orthostatic intolerance), unchanging heart rate during exercise and vision problems such as sensitivity to light or blurry vision. Memory loss, brain fog, migraines, thrombosis, teenaged epilepsey, or stroke are other signs and symptoms of ANS dysfunction.
The importance of collaborating with the dysautonomia community is absolutely necessary given the overlap between the two diseases. Approximately 75% to 92% of people who suffer from ME have orthostatic intolerance and/or other symptoms of dysautonomia like cold hands and feet, gastric and irritable bowel symptoms and light sensitivity. Many dysautonomia patients report a triggering events such as an infection or physical trauma. Some have post-exertional malaise, implying that there are patients diagnosed with dysautonomia who also have ME. Just like ME, dysautonomia affects more women than men. Therefore, understanding the underlying causes of diseases like postural orthostatic tachycardia syndrome, neurocardiogenic syncope, and multiple system atrophy may give key insight into some of the symptoms and possible mitigating treatment for ME.
Like ME, dysautonomia has no ‘home’ at the NIH: there is no single institute that takes grants for the class of disorders.  If a researcher has an idea for a study, they must first class it as a cardiovascular issue; or field to NINDS if it can be termed research into the nervous system; or allergy and infectious disease for issues with respiration. And they are just as likely to be turned away by a bewildered cadre of grant reviewers who wonder what dysautonomia is, or how it fits into the goals of their Institute.
By partnering with people who have been labeled with dysautonomia, people with ME will support individuals whose diagnostic struggles and searches for treatment often mirror our own. With such a high prevalence of dysautonomia in ME, by supporting research in dysautonomia, we will be supporting research that helps the vast majority of people with ME.
Perhaps the greatest power between the two communities is our relentless pursuit for relief, recognition, and understanding. Their diagnostic stories are marked by misunderstanding, psychologization, and medication mishaps. The story of Maite Goya, who traveled from Mexico to attend the conference, follows the same pattern as the one that ME patients experience. Pre-diagnosis, Maite bounced from clinician to clinician, many of them uncaring and dismissive. Clinicians told her she was “too stressed”, and even her accused of being “a bit too clever for her own good” — something two other women at the conference had also been told by their doctors. She had food intolerances, so she was referred to a specialist for anorexia. Relatives told her she could cure anything she liked with a positive enough attitude. Eventually, she was diagnosed with a rare form of dysautonomia and epilepsy. She has found some relief in taking an anti-cholinergic.

Seeking diagnosis, Maite Goya was told she was “a little bit too clever for her own good.”
Discoveries made in the field of dysautonomia may shed light on the mysteries of ME, and drugs that help dysautonomia may serve effective for our population since dysautonomia is so common in people with ME.  
Read along
#MEAction chronicled the experience of participating in the dysautonomia conference via twitter. Check out the full stream here. Below are a few about Mast Cell Activation to perk your interest. Also, Cort Johnson has published a write-up about the conference here.  

    Check out the full Twitter stream here.    

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2 thoughts on “Learning about ME at the Dysautonomia Conference”

  1. Raquel mena taylor

    Muy interesante !!! Está lleno de lógica…
    Una vez mas…Gracias Jenni Brea !!!

  2. I like how you explain that dysautonomia refers to diseases that affect the autonomic nervous system. My uncle suffers from dysautonomia and he hasn’t got any treatment yet because he says that he doesn’t want to take any medicine. It would be nice to find a holistic treatment or a professional that could treat my uncle without using any medicine.

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