Constantly I am inundated with article titles, statements, and ‘tips’ that tell me that the key to being healthy is a good night’s sleep. Or that exercise is essential to healthy living. Yes, these things are great for most people. But they do not work for me or ME.
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What is ME?
Myalgic encephalomyelitis (ME) is a multisystem disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems. As noted on the CDC website, up to 2.5 million Americans suffer from ME. There may be as many as 24 million people across the globe that suffer from this debilitating disease. Sadly, so many suffer in silence. Unable to get properly diagnosed and even once diagnosed, unable to get healthcare support. In short, the medical community has fallen greatly behind when it comes to supporting these patients.
When Even Chewing Can Cause Fatigue
So, when I hear those well-meaning commercials or article taglines, while I know it aligns with the needs of most people, I can’t help but cringe. Real sleep and ME just don’t mix – if I do get lucky enough to fall asleep and also stay asleep (neither are guaranteed despite unbelievable exhaustion), there’s no restorative value to it.
Then there’s the endless exercise promotions. While I used to love (crave, even) to exercise, any attempt to do so will cause me to relapse and experience an extreme flare-up in my symptoms. It can make getting out of bed an unconscionable thought. Hard as it may be to believe, the exercise of chewing (yes, chewing is considered exercise for me now!) can even be too much.
How Much More is There Left to Really Promote?
Those commercials and popular magazine taglines…yes, I get that they resonate with the majority. If only my day, any day of mine, could be so easily ‘fixed’ by some sleep and exercise. I am the one that needs the tips and strategies. Those other articles, while mainstream, are a dime a dozen. They are EVERYWHERE. How much more is there to say about those topics for the healthy?
Much More Education is Needed on Chronic Illnesses
Flip the coin: With more than 1 million people in the United States with ME and up to 24 million across the globe, is it too much to ask to see a few headlines that talk about tips and strategies for those that ‘getting enough sleep’ or ‘exercising your way to health’ just isn’t an option? It would help not just those with ME, but the tens of thousands (the millions) with other chronic illnesses as well. Personally, I would love to read many more articles that provide strategies for getting through a day with a chronic illness.
The Hope That ME Experts & Foundations Bring
While there are few ME experts across the globe, those that exist I wholeheartedly admit are priceless and fill me with so much hope and also help! Notably, the Open Medicine Foundation (busy researching for a cure and updating us along the way!), Solve ME/CFS Initiative (vigorously supporting scientific research and advocacy!), and #MEAction (an incredible global community of outreach, advocacy, education, and support organization) are amazing organizations that thankfully are there for us every step of the way. I’m also grateful that many states are now also forming such organizations, including my own state through which I have co-founded the Minnesota ME/CFS Alliance. But we need more.
Support is Still Needed on Many Levels Within Society
With so many afflicted with ME, we need support at the local level from our physicians, disability providers, human resource departments, social services, and also the media.
Through research, programs to educate medical students and providers, advocacy, and increasing awareness of ME, all of us, sick yet fighting for a better quality of life, are making great strides. One of the greatest such strides was made by Jen Brea with her award-winning documentary, Unrest, that put ME on the map. So, I do see light at the end of the tunnel. The tide is slowly turning. But I still must ask:
Mainstream Media: Can you dedicate some articles that will help me with ME? You not only will be helping a million Americans and up to 24 million people globally, but also raising awareness of this debilitating disease. Awareness, curiosity, learning…it leads to understanding, compassion, hope, support. All things that the ME community needs from the public, its public figures, the government, employers, and the healthcare community.
*Note: This article is the author’s personal opinion, and meant for educational purposes. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
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