ME/CFS explained in simple terms

As I'm sure most of us have, I've read dozens, maybe hundreds of attempts to explain ME/CFS.  I know from experience, it's no easy task.  This illness is so complicated that if you try to simplify it, you downplay the seriousness, but if you try to explain it in its full 'glory', you'll likely lose your audience.

This is one of the clearest and best I've read at least with respect to the role of cytokines—although a bit oversimplied.  A highlight is excerpted here, but the whole article is worth perusing if you have time:

"With an infection, the body jumps into action to defend itself, but usually not for several days. For example, if you are in the checkout lane at the grocery store and the person next to you coughs on you, you breathe in the flu virus. The virus particle lodges in your airway and begins to multiply; yet you feel just fine. In fact you feel fine for three days or so (the incubation period) even though the virus is growing like mad. Then, Saturday afternoon, at exactly three PM, you come down with the flu: fever, headache, aches and pains, exhaustion, sore throat, nausea… What actually happened on Saturday was that your body recognized the attack by the flu virus and began making cytokines to begin the counter-attack. And the cytokines make you feel sick.             

You stay in bed for a few days while the battle rages. The battle is carried out on several fronts and after the immune system makes antibodies the infection is brought under control. When that happens the production of cytokines slows down, stops, and you feel better. A few more days and you are back to normal, if everything goes right.            

The production of these cytokines, (specifically interferon, IL-1, IL-6, and TNF) is known to cause the symptoms of illness, often called “acute sickness behavior.” This term does not imply that there is anything artificial or psychological about the behavior, it is as real as limping behavior in a person with a broken leg. These effects of cytokines were discovered during trials where the cytokines were given to healthy volunteers who then developed fever and other symptoms.            

 In ME/CFS something goes wrong. The infection may be an ordinary “garden variety” virus, an enterovirus, or the Epstein-Barr virus of mononucleosis. But in a person with the genetic vulnerability the process does not shut down and the flu-like sensation persists for months, years, sometimes for the rest of his or her life. It is this abnormal mechanism that is the center of attention in ME/CFS.            

The symptoms caused by cytokines differ from “end organ” symptoms. For example, weakness is a common symptom in ME/CFS, but muscle testing with electrodes does not indicate muscle fiber disease. Characteristically, the sensation of profound weakness is experienced by those persons given cytokine injections despite normal muscles. Confusion and problems with memory and attention are symptoms caused by cytokines and in experimental subjects, when the cytokine wears off these cognitive symptoms resolve without damage to brain cells (presumably). It is precisely because these symptoms are not caused by diseases of muscle or joint that medical providers have ignored them. If you go to the doctor with a cough caused by the flu you are patted on the head and ignored, unless you cough up gobs of lung tissue. Then it is taken a little more seriously."

Of course, this is just part of the big picture.  It doesn't address the endocrine issues, mitochondrial dysfunction, myalgias, neurological issues or any of other symptoms we experience.  These other symptoms are only alluded to in the full article as being a downstream result of the "abnormal cytokine cascade"—but it's a good start.

I like how the author begins by relating ME/CFS's origins to a normal cold/flu, which is a great starting place for readers who haven't studied ME/CFS.  When explaining ME/CFS to someone who doesn't have it, it helps to start with something they can understand and relate to, and build from there.  The next time I have to explain ME/CFS to healthy person, I'll start with this article.