Sections

Weather Forecast

Close

Local View: Why won't Minnesotans help me -- or 'M.E.'?

I am me. I'm an eternal optimist. I find good in every situation and spread gratitude like it's glitter. I love people, figuring out what makes them tick and being there for them when they need me most. I'm the person who will surprise you with the little things in life that matter the most to you. I jump at the chance to partake in new experiences, including adventures that scare me just a little bit but end with a rush of excitement. I love the outdoors, hard-core workouts, being honest, and Netflix-binging. No matter what challenges come my way, I will rise up to them. In short, I love life and all the opportunities it brings.

Lisa AliotoBut then there is also "M.E." I will leave you guessing moment by moment how I will hurt you. I will hurt you every which way I can: physically, mentally, and emotionally. I will steal your friends and all that you love about life, and I will force you into isolation. Essentially, I will put you on house arrest, most likely at the most inopportune of times. I will break your heart again and again and leave you grieving daily for all I've taken from you. I'm selfish: I will take, take, take. It's never enough. I will exhaust you to no end. You will constantly be wondering day to day what I will do next to you. I will never give up. Trust me, there's always more I have in store for you. Most of all, I promise that I will never, ever leave you.

Who's the second me, the "M.E.?" That's an abbreviation for myalgic encephalomyelitis, a severe, complex neurological disease that affects all body systems. More than 1 million people in the U.S. and 17 million worldwide have been taken over by this disease.

It leaves the far majority of people with it unable to work; at least 25 percent, or 250,000 in the U.S., are homebound. Despite its debilitating effects, it receives less research funding than other diseases like multiple sclerosis — even though M.S. affects many fewer individuals.

While I certainly don't advocate cutting funds for M.S. or other similarly funded conditions, my question is this: Why are the sizable funds we see for less-prevalent diseases not there for M.E.? If you watch the heartbreaking stories shared in the award-winning documentary film, "Unrest," you can't help but ask: What's going on here? As someone with M.E., I ask, Minnesota, why won't you help me?

I am exhausted of living with M.E. I want to be me again!

I am a lawyer, career coach, and myalgic encephalomyelitis warrior with a strong belief in the power of positivity, even in the face of chronic pain. I strive daily to increase public awareness and understanding of those with disabilities, in particular those with chronic and invisible illnesses.

Lisa M. Alioto of Roseville, Minn., attended Duluth East High School before attending the University of Wisconsin.

Advertisement