Thursday, May 2, 2019

Do Medical Mysteries Intrigue You? If So, Listen Up….

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.
Myalgic Encephalomyelitis

Do you know what else happens every day? Myalgic Encephalomyelitis (ME).  ME dominates the lives of millions of Americans and up to 30 million people worldwide.  It is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.  It leaves 75% of those affected unable to work and 25% of those homebound are bedridden. There is no cure for ME, though the Open Medicine Foundation is pouring their heart and soul into finding one for us.  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.  This disease is that debilitating!

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, legislators, employers... and the list goes on. Those of us with ME find ourselves facing doubt from our employers because when we (if we even can!) 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 often hide it because we don’t want to been seen as “less than” in any way by anyone.  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 very little or no knowledge of it.  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, if we are lucky, we find a physician that can properly diagnose us, at which point we are told it’s an incurable, chronic condition.  And sadly, just getting that diagnosis is a bit of a relief, from the searching, the wondering, and the trial and error.  Though while that part ends, the heartbreaking pain and grief for our old life continues.

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.  It’s now streaming on Netflix and is a great way to learn more about this debilitating disease.

While this movie has taken the world by a storm and has brought about increased awareness and even, slowly, change in some cities, states, and within the medical community, it has been an uphill battle to make this happen.  Thankfully Solve ME/CFS Initiative#MEAction and many state and local organizations are engaging the entire ME/CFS community in research to accelerate the discovery of safe and effective treatments, raising awareness, vigorously advocating, actively supporting patients, and more! They are invaluable to the support, care, and future of finding a cure for ME.  So much more needs to be done though and quickly.  We are losing lives daily!   

We need your help - doctors, scientists, researchers, legislators...  So many lives are shattered by this debilitating condition.  It needs to stop.

Call to Action

PLEASE start helping us now.  Legislators and healthcare agencies, please provide ample research funds to be directed specifically to ME research; medical schools, please start integrating ME into your medical programs; and physicians, please urge your continuing education providers to teach you more about this illness so you can better help and support your ME patients.


Please, just help us!  Please give us at least a chance for a better life, the life we deserve and have worked so hard for.  Solve the mystery!



2 comments:

  1. Sadly I've known quite a few people in my life with ME and it deeply saddens me that it's not taken more seriously and that it doesn't have the research put into it (and what research is done is largely ignored - despite studies finding Physiotherapy and Exercise programs make it worse they are still often recommended for treatment :( )

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  2. It is very sad... As a previous Mayo patient I'm dismayed that they still recommend exercise. Thank you for sharing your sentiments - and for your readership!

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