I don’t know why Llewellyn King, executive producer and host of “White House Chronicle” on PBS, gets ME/CFS as if he was a sufferer himself, but he does. I just read his latest piece covering the illness, Chronic Fatigue Syndrome is Misunderstood, and— as his writing has done in the past—it brought me to tears. Not because it painted the disease as “AIDS-like misery,” but because it showed it so accurately, something I have learned not to expect from anybody (and certainly not the media) other than the many patients or the few medical experts.
On a day that I received a book from my aunt written by a psychologist who claims that every chronic illness can be overcome by willpower, I am so very grateful for Mr. King’s authenticity: “If [recovery] does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had.” Yes, being half-way into my sixth year with the illness, this is an absolutely frightening thing to read, but at least Dr. King doesn’t blame me for having caused my own sickness, an accusation that has such devastating effect on the severely ill.
It has been a rough few days with the irregularities in the Chase Community Giving program and the shockingly premature and irresponsible Expression of Concern by Science magazine regarding the 2009 paper that linked ME/CFS to XMRV. Despite the bleak picture that Mr. King’s article paints, I highly recommend it as an encouraging read to my fellow patients and also as a wonderful piece of education for those who want to learn about our disease.
Here are a few more memorable quotes:
“For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life’s littlest pleasures.”
“There are no more normal days, only different degrees of weakness, pain and other symptoms.”
“It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.”
“‘You know the trouble with this disease? All this time goes by with nothing in it. You don’t get a chance to put anything in it. It’s just empty time.’”
Thank you, Mr. King!