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About The Disorders

What Are ME/CFS, Dysautonomia, and Long COVID?

  • ME/CFS is a complex illness defined by pervasive, overwhelming fatigue that is not improved by rest.  ME/CFS often gets worse after any activity, whether it’s physical or mental (this is called post-exertional malaise, or PEM).  Other symptoms include problems with sleep, thinking, and concentrating; pain; and dizziness.  According to the CDC, at least one in four ME/CFS patients is bed- or house-bound for long periods of time.  A great resource to learn more about ME/CFS is the Solve ME/CFS Initiative website.

 

  • Dysautonomia refers to a group of medical conditions caused by problems with the autonomic nervous system (ANS).  The ANS controls involuntary bodily functions like breathing, heartbeat, and digestion.  When it doesn’t work as it should, it can cause heart and blood pressure problems, trouble breathing, and other related symptoms.  Want to learn more?  Check out Dysautonomia International  and the Dysautonomia Information Network .

 

  • Long COVID is thought to be similar to ME/CFS.  Also known as Post-Acute Sequelae of SARS-CoV-2 infection (PACS), it is a condition that arises after acute infection and often includes shortness of breath, fatigue, and “brain fog” but can also involve a wide range of debilitating problems in the heart, brain, lungs, gut, and other organs.  Interested in learning more?  Take a look at the PASC Dashboard and related pages!

Why Raise Money for ME/CFS, Dysautonomia, and Related Disorders?

At her best, Emily functions at a level of about 60% of a “healthy person”; at her worst, she can be as low as 25%.  She dedicates her energy and spoons to a mission that drives her: keeping Dr. Rowe’s legacy alive, raising money for an illness that receives little to no funding, supporting research, and creating connections among others with these illnesses.  She hopes that her story and her work will mean that in the future, others won’t face the same dismissive attitudes, lack of treatment, and shortage of practitioners that exists today.

 

These illnesses affect a staggering number of people:

  • According to Solve M.E. (an awareness and advocacy group for those with ME/CFS), it is estimated that between 5 – 9 million Americans, and 17 – 24 million people internationally, suffer from ME/CFS.  Source 

  • According to Dysautonomia International (an awareness and advocacy group for those with dysautonomia), over 70 million people worldwide suffer from some form of dysautonomia.  Source

  • Recent estimates from the American Academy of Physical Medicine and Rehabilitation indicate that anywhere between 10 – 30% of those who contract COVID-19 will continue on to have Long COVID; that’s between 3 – 10 million people.  Source

 

Unfortunately, there are no cures at this time for any of these conditions.

 

ME/CFS and dysautonomia receive one of the lowest amounts of government funds among illnesses, and Dr. Rowe depends on philanthropy to support his research.  Money raised via RRR also allows him to hire research assistants, which has directly resulted in his ability to publish several research papers and continue his work.

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