Two days before Thanksgiving with a big blow coming in—can the giant balloons ride the wind for Macy’s parade or will they have to be grounded? Big question. The country waits breathlessly for the news—or not, as the case may be.
People wake up, brush their teeth, drink coffee and, on the way to work, ponder personal plans for Thanksgiving Day and what weather-induced modifications they might have to make. Me? I have a dentist’s appointment this afternoon, and that’s a big deal.
I have CFS/CFIDS/ME, i.e., chronic fatigue syndrome, chronic fatigue immune deficiency syndrome, myalgic encephalomyelitis. I’ve had it for decades. It was diagnosed sometime around 2000 but most physicians know nothing about it.
They disparaged me, shook their heads and wouldn’t talk about it, brushed it aside because they didn’t understand it, and taught me not to talk about it. I learned to live with it without understanding it. Day after day, week after week, for more years than I can count, I learned to modify and adjust my lifestyle to get as much living as possible into my life.
On October 31, a Harvard graduate student appeared on Good Morning America to talk about having the disease and making a movie about it. http://abcnews.go.com/Health/nj-woman-bedridden-devastating-disease-doctors-heard/story?id=20734936
It started me thinking and doing research, and I have discovered how profoundly the illness has affected my life. Also, how terrible my life has become because physicians are not taught anything about it in medical school and then go on to learn nothing.
CFIDS is a neuroimmune illness. There is some indication that it starts with a flu virus that affects the brain. It also compromises the immune system, 80% of which is located in the gut. Who knew? Why would the Great Designer put it in the gut, for Pete’s sake?
Every cell in the human body has got a little bit of the immune system in it. When the immune system is offended, you feel it in your whole self. You can’t say “I have a level 8 pain in my leg,” or “a level 2.5 pain in my gut.” All you can say is “I feel bad all over.”
There is no single good treatment identified, but the best treatments seem to be the alternative or complementary treatments, which makes sense because the immune system’s first job is to prohibit invaders from entering your body. Guess what? Drugs, e.g., pharmaceuticals, are foreign invaders. Of course your body pitches a hissy fit if you have CFIDS and take drugs.
According to one source, the worst drugs to take—or the drugs that make the sickness worse—are benzodiazepines (took ’em for five years) and antidepressants, which I took for 26 years. God, no wonder I’m sick.
I have a very clear memory of going to a neurologist in 1975 and complaining of fatigue—peculiar fatigue. It wasn’t a kind of tiredness that I ever got over. I just kept on being tired. I had no spontaneous movement in my legs. That kept bothering me. No spontaneous movement in my legs. They would just lay there on the bed, sticking their tongue out at me, as it were, and saying “Nyah, nyah, nyah!”
The neurologist said I had endogenous—indwelling—depression and put me on antidepressants. And there went the next 26 years of my life—right down the drain with nobody ever attending.
CFIDS is properly diagnosed and treated by immunologists. There are none in Central New York. Well, one did arrive at Upstate Medical Center. I went to see him a few years ago. It was not a productive effort, but I’m going to try again.
In the absence of immunologists you turn to rheumatologists as the next best thing. At various times, I was referred to three different rheumatologists in one group here. Each did his tests, said there was nothing wrong with me, and—in the end—asked me not to come back to their practice.
You see, here’s the way the practice of medicine works: you graduate from medical school with an infinitely expandable set of boxes. Each box carries the name of a disease and the specific tests to diagnose the disease. The doctor pulls the test list out of the box, orders the them, gets the results, and tells you yes-or-no, you’ve got the disease or not.
Or, as explicated by one on-line source: “An unhelpful line of thinking among ‘dinosaur doctors’ is to say to a fatigued patient, on receipt of a normal set of blood reports, that there is ‘nothing wrong.’” In fact, there may be a hell of a lot wrong but you’re not going to find it by looking that way.
Here’s what I want in an immunologist: first, a person who really listens. Dr. Nasri Ghaly, physician extraordinaire, was taught by his best professor in medical school in Cairo to listen. He said the patient knows what is wrong and will tell you if you really listen.
Dr. Ghaly practiced rural medicine in Egypt around 1965. He was the honored guest in the home and would be invited in, sat down and given a glass of tea. Then he would listen to all the family talk and by the time he was alone with the patient, he would already know what the diagnosis was. Dr. Ghaly said more than once that he wished his old teacher could listen to me.
So, first, what I want is the doctor who listens. It’s the only way you can diagnose CFIDS. Another on-line comment: “In making a diagnosis of CFS/ME, it’s important to exclude other conditions that can cause some or all of the symptoms – although there are really no other conditions that look exactly like it in all its aspects.” Once a doctor “gets it” then he’s got it.
There are patients who report seeing as many as twenty physicians before being correctly diagnosed. Ain’t nobody listening.