Do you believe cancer exists? That heart attacks happen? Or that an aneurysm can kill you? That Alzheimer’s really causes memory loss? Or that strokes can cause paralysis? Of course you do — they exist and they happen, sadly, every day.
Do you know what else happens every day though? Myalgic encephalomyelitis. ME dominates the lives of over a million Americans and over 11 million people worldwide. It’s a neurological condition that affects all body systems. Approximately 25 percent of ME patients are homebound and only a little over 10 percent are able to continue to work full-time.
Many of us with ME are as or more functionally limited than many people with multiple sclerosis, congestive heart failure and end-stage renal disease. We also oftentimes have a lower quality of life than people with cancer and those that have had a stroke.
So why haven’t you heard of myalgic encephalomyelitis?
I wish I knew. ME has been ignored and marginalized by so many for so long — doctors, researchers, legislatures... and the list goes on. Those of us with ME find ourselves facing doubt from our employers because when we go to work we pull ourselves together with our last bit of energy and fake it until the day is over and we can go home and collapse into bed. ME is considered one of the many “invisible illnesses” because our pain is not externally facing for the most part; we hide it because we don’t want to been seen as “less than” in any way by any one.
More importantly, we are not less than.
When it comes to going to the doctor, the far majority of us have to explain ME to our doctors who have no or very little knowledge of it. Even living in a major metro community, our medical providers admittedly don’t know how to help us, bringing us through medication trials again and again until they throw their hands up. At which point we are so exhausted and literally financially spent that we suffer in silence. Until that one day we find a physician that properly diagnoses us, we are told it’s an incurable, chronic condition. There are no treatment options. And sadly, just getting that diagnosis is a bit of a relief, from the searching, and wondering, and the trial and error. Though while that part ends, the heartbreaking pain and grief for our old life continues, unendingly so.
Why are conditions that afflict so many fewer given so much more funding than conditions that affect far more and in a much more debilitating way? Why is ME ignored? Thankfully, I hope, that is slowly changing with the global popularity of the award-winning documentary movie Unrest. The movie Unrest is directed by Jennifer Brea, who as a Harvard PhD student about to marry the love of her life, is struck down by a fever that leaves her bedridden. She becomes progressively ill, eventually going online to find a hidden world of millions confined to their homes by myalgic encephalomyelitis.
While this movie is taking the world by storm and has brought about increased awareness and even, slowly, change in some states and within the medical community it has been an uphill battle to make this happen. And so much more needs to be done. We need your help — doctors, scientists, researchers, legislators...
So many American lives are shattered by this debilitating condition. It needs to stop.
PLEASE start helping us now. Legislatures and healthcare agencies, please provide research funds to be directed specifically to ME research. Medical schools, please start integrating myalgic encephalomyelitis into your medical programs. Physicians, please urge your continuing education providers to teach you more about this illness so you can better help and support your ME patients.
In Minnesota alone there are so many of us struggling to find help and support with myalgic encephalomyelitis. Please give us at least a chance for a better life or even just a life.
This is the opinion of Lisa M. Alioto, a Minnesota lawyer, career coach and myalgic encephalomyelitis warrior.