Study Background

Individuals affected by autonomic nervous system dysfunction, or dysautonomia, often report many co-occurring conditions and symptoms including fatigue, pain, and sleep disturbances .^[1] When the cause of fatigue is unknown, persists for at least six months, and is associated with post-exertional malaise or pain, it may be categorized as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).^[2] ME/CFS is a debilitating disorder which, according to the Centers for Disease Controls, currently affects up to 3.3 million people the USA alone.^[3,4] The co-occurrence of disordered sleep, ME/CFS and associated pain, and dysautonomia (including Long-COVID-associated dysautonomia) has been previously established.^[6–10] Sleep studies in dysautonomia and ME/CFS patients indicate that patients experience a poor sleep quality, greater daytime sleepiness than tired controls, and changes in sleep cycles and stages.^[5,9] While the prevalence of ME/CSF and disordered sleep is in dysautonomia is far greater than in the general population, the exact prevalence of these symptoms/conditions is not clear.^[10] In addition, the relationship among these symptoms is not well understood. 

Study Aims

1) To assess the prevalence of fatigue (including ME/CFS), pain, and sleep disturbances in people affected by dysautonomia.
2) To assess the impact of fatigue, pain, and sleep disturbance on different domains of quality of life of people affected by dysautonomia. 
3) Understand whether an increase in one of these symptoms affects the severity of the other two symptoms.

Inclusion Criteria

In order to qualify for this study, participants must be:

1. At least 18 years old.
2. Have a formally-diagnosed autonomic disorder of any type.
3. Able to read/write English. 
4. Able to decide whether to participate in a research study

How the study is conducted:

The study is conducted online and participants are asked to complete the following questionnaires only once:

1. Fatigue, pain, sleep disturbance, and quality of life questionnaires. This should take no more than 10 minutes.

2. Dysautonomia any co-occurring condition(s) questionnaire. This should take up to 5 minutes.

3. Economic impact questionnaire. This should take no more than 5 minutes.

Benefits of enrolling in the study:

Your participation in this study is completely voluntary and confidential. Your participation may not have any direct benefit to you. There is no monetary compensation for your participation. However, your participation will help us understand how common fatigue, pain, and sleep disturbances are in dysautonomia and how these symptoms affect this patient population. This is an important step which we hope will help raise awareness of these symptoms in the medical community and improve the quality of life of dysautonomia patients.