Good morning, again!
There is great good news, and that is that I am feeling better. Why? Two reasons, we think.
First, I have been on bedrest for six months. Remember, this disease—S.E.I.D.—originally was called chronic fatigue syndrome (CFS), then chronic fatigue immune deficiency syndrome (CFIDS). It is all about a form of tiredness that is not relieved by a good night’s rest. You may recall that in 2013 I spent 104 days confined to bed at Crouse Hospital. Then I went home and took care of myself for several months without an aide. I got Meals on Wheels, and paid for someone to come in once a month to do the cleaning.
In Great Britain they are way ahead of the United States on the diagnosis and treatment of SEID/myalgic encephalomyelitis (ME). They have clinics that exist solely for the treatment of SEID. SEID/ME patients are routinely admitted to hospital or nursing home for a year or two. Seriously, the British are way ahead of us. Why would that be?
Well, for one thing, the royal family uses homeopathy. From the top down, the British know from experience that there are better ways to treat sick people than by giving them pills—and their insurance pays for it. Prince Philip is 94 years old, and what does that tell you?
The other thing requires a brief review of the possible cause and effect of SEID/ME: a virus migrates to the brain where it creates an autoimmune disease. The autoimmune disease affects the nervous system and the immune system. When you administer drugs to a person, the first thing that happens is the immune system raises its head and yells “What the hell is that!?” Answer: it is not a carrot or a cheeseburger, so the immune system tries to expel it from the system. The effort to expel is called “side effects.” Nausea, diarrhea and fatigue are all ways the immune system tries to get past this bad stuff you’re putting in your body.
CFS/CFIDS/ME/SEID all are different names for a disease in which the immune system is damaged and can’t tolerate pharmaceuticals. So the pharmaceutical companies leave it alone. It is too hard and costs too much money to develop useful drugs.
Also, medical schools do not teach SEID. There’s no treatment, so why bother? Whether this cycle of ignorance begins or ends with the pharmaceutical companies or the medical schools is unknown, but they both are complicit. One outstanding physician told me that he learned more about the immune system from trying to treat me than he ever learned in medical school.
Because patients with SEID are not being properly diagnosed, they are being improperly diagnosed. Remember, SEID affects the immune system and the nervous system. The nervous system affects both your ability to walk, and your ability to remain calm in the face of difficulties. Consequently, the medical profession diagnoses your autoimmune disorder as a psychiatric disorder, particularly depression.
You know how you can figure out if you have depression or SEID? Take a nap. If you wake up un-depressed, then it’s SEID. If rest clears up your depression then you’re not depressed—you’re tired. And do not take antidepressants! According to Dr. Sarah Myhill, world expert on chronic fatigue, antidepressants exacerbate the problem. I was given antidepressants every day for 26 years. Now, at the age of 69, I am bedridden in a nursing home. You wanna go with that???
So where do we go from there?
The first half of why I’m feeling better is that I’ve been on bedrest for six months. I have systemic exertion intolerance disease (SEID) but I have not been exerting myself. Other people buy and cook my food, do my laundry, wash my hair, and pick up a fork dropped on the floor. I do not make the situation worse by exerting myself.
The other part of why I’m feeling better is that I’m up to 8 minutes a day in using the lightbox. Maybe we can talk about that tomorrow.