This month, I will be tuning 53, marking our 31st year with ME. My wife & I both became ill in 1987. What I’d like for my birthday is for this scenario to change:
Some of the most painful and alarming times in our years of illness have been when we’ve had to enter a hospital emergency room for a life-threatening event and encountered one of these responses when we give the name of our disease (chronic fatigue syndrome):
A. “What’s that?”
B. “Oh yeah, the Yuppie Flu.”
C. “I have that too. I get so wiped out chasing my 2-year old around the
house before I come to work every day.”
Someone might ask, “What difference would it make? Who cares if they don’t know what it is or how serious it can be?” Besides the obvious comfort any patient receives when the doctor or medical staff knows about and understands his or her condition, there are serious medical repercussions:
First, many medications could have extremely detrimental effects, especially if given without a certain diagnosis or for preventative purposes (prophylactically). This would include antibiotics, which typically worsen the disease even if they succeed in clearing an infection that could have been treated differently. Secondly, there are many medications (statins, metformin, antibiotics, etc.) that are known to suppress mitochondrial function, something that is impaired in ME/CFS. Ignorance of this fact could cause a patient to relapse and lose the current level of functioning.
Finally, if there were a need for a prolonged hospital stay, the lack of awareness of our physical limitations (e.g., need for rest between activities, PEM, etc.) could lead to worsening of the disease by overexertion.
It is sheer medical negligence that between 1-2 million Americans are affected by this neuroimmune disease and hardly any research has been done for the past 30 years. That’s at least twice the number of MS patients, and the funding has been 100 times less for ME, a more disabling disease.
As ME patient, Liz Burlingame (in an 11/28/17 Atlanta Journal-Constitution article), said about the ignorance of this condition, even among doctors, “The name chronic fatigue syndrome (CFS) might just kill me someday.”
What I'd like for my 53rd birthday . . .
Blog entry posted by RWP (Rest without Peace), Feb 1, 2018.
About the Author
I am a Classical pianist who has been unable to teach or play for several years. I have done extensive medical research throughout our illness for both of us [my wife is PWR (Peace without Rest)]. I have tried to follow emerging developments in ME/CFS research over the past few years and integrate it in my thinking with what preceded it.