In 2016, I was diagnosed with myalgic encephalomyelitis (ME). My first thought was, what is that?? All I knew was that it was taking over my life. I soon learned that ME is a multisystem disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It’s more commonly known in the United States as chronic fatigue syndrome (CFS). This debilitating disease affects 17-24 million people globally.
My next thought was, why haven’t I heard of this before? Am I all alone in this? Ironically enough, it’s estimated that more than 17,000 people in Minnesota have ME. Approximately 75 percent of them are homebound, with a quarter of them also being bedbound. So many hidden away in their homes, hidden away from society.
As someone with ME, I felt lost and alone with this disease until I found one other person with ME, and that led to another, and another. Soon it became apparent that we needed to unite if we were going to have a fighting chance at improving our lives.
In comes the Minnesota ME/CFS Alliance, a new Minnesota nonprofit organization dedicated to supporting ME/CFS patient and caregiver needs through support, advocacy, and generating enhanced medical care options. The Alliance’s goals are to promote a timely diagnosis with qualified medical support, alleviate patient suffering, and support research for a cure for this underserved and vulnerable population.Living with an invisible, isolating illness can be unbearable. I have found that connecting with others with the same, often misunderstood and medically underserved condition has been priceless though; the validation, the “survival” strategy sharing, and simply not feeling so alone — all of it has been invaluable in ways that are hard to explain.
I should clarify, when I say alone, I don’t just mean isolated in our homes as we work with our medical providers on managing the painful, exhausting symptoms of ME. I mean ALONE. Minnesota, a state that proudly touts a strong medical industry, is also a state with very, very minimal medical provider support for this condition. It’s embarrassingly true. As someone with ME, my biggest source of information on how to minimize the effects of my symptoms is Google and Facebook groups. Seriously!
If you are one of the thousands missing in Minnesota, I encourage you to connect with me, vice president of the Minnesota ME/CFS Alliance (email@example.com) or our organization (firstname.lastname@example.org). You are no longer alone; we understand your pain, challenges, and needs. We are here to help! Together we will work toward unified goals to enhance our quality of life.
Patients, caregivers, please join us! And if you are interested in donating to this cause, please feel free to reach out to us at email@example.com.
Lisa Alioto is a lawyer, career coach, and myalgic encephalomyelitis warrior with a strong belief in the power of positivity. She is also the vice president of the MN ME/CFS Alliance. Alioto is passionate about supporting ME/CFS patient and caregiver needs through support, advocacy, and generating enhanced medical care options.
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