~Source: Open Salon. March 30, 2013.
By Llewellyn King
I am a reporter and my beat is hell. But it is neither the eternal hell of the Bible, nor Tartarus, the ancient Greek underworld, where the gods of mythology locked up their enemies.
The hell I write about is more prosaic: It is here and now. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice.
The disease is Chronic Fatigue Syndrome (CFS), a benign name for a malignant condition. Patients prefer that it be called by its old name, and the one used elsewhere in the world, Myalgic Encephalomyelitis (ME). But they are stuck with CFS because that is what the Centers for Disease Control named it when following investigation of a Nevada outbreak that sickened 300 people in the 1980s.
After more than 50 years in the newspaper trade, I chanced upon CFS – which, in my opinion, is the great under-reported medical story of the times — through a friend and colleague who had been felled in her prime and has suffered relentlessly for 23 years. For two of those 23 years, she was so sick that she could only lie in a darkened room on a couch, which she sometimes thought was her coffin.
I wrote one column and was besieged with e-mails of gratitude; notes that began with “thank you” and ended with “bless you.” Journalists are not used to this kind of thing; instinctively, they suspect a trick.
Fatigue that is not alleviated by sleep — official symptom No. 1 — is just the first circle of hell for CFS victims. That does not communicate the terror of helplessness patients report from losing all their abilities, energy and strength – losing the very life force that makes a person both human and alive.
The disease attacks the brain. Patients suffer mental fog and memory and concentration losses, as well as cognitive problems such as aphasia and dysphasia (language problems). This may reflect infection or immune system activity in the brain.
Patients commonly are tormented by pain – by bones that feel as though they will explode, by migraine-type headaches, by extreme sensitivity to light and sound. Stomach upsets abound and can only make worse the problems of generating energy, which so often lead to complete physical collapse. Some patients are bedridden for years. Some of my correspondents tell me they pray for death to end their suffering. There are many recorded suicides.
Inability to function for more than a few hours a day is common among those who are in what might be called remission – periods when not confined to bed and well enough to function in a limited way. Others respond to some antiviral drugs prescribed by adventurous physicians. The body of opinion is that CFS is viral disease, but no virus has been isolated. Men afflicted with it fare better than women.
Although it is believed to have been around for centuries, CFS has been followed more closely since an outbreak at The Royal Free Hospital in London in 1955 and at Incline Village, Nev., in 1984-85 and an outbreak at Lyndonville, N.Y., in 1985. Sociologically, geographically and climatically all three of these sites were as different as can be – except healthy people, many of them children, came down with something like flu initially, then collapsed, usually after exercise, and have remained sick to this day.
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Researchers have noted a variety of pathogens that could be seem to be involved; the highest probability — and most talked about in the CFS community — is that there are many things that can leave a window open in the immune system and through which CFS can climb at any time.
No biological markers for the disease are officially recognized by the CDC. So doctors have to use what is called a “waste basket” diagnosis: If it is not anything else, then it may be CFS.
It appears that families are at some risk of infection in the early stages of the disease. Mostly the patients suffer alone for days, weeks, months, years and decades. Families are crushed with debt and the burden of providing, especially when a parent is also afflicted.
Family members, spouses and lovers drift away and the patients’ suffering goes on — worse some years than others. It is a life sentence — condemning more women than men – for 1 million people in the United States, according to government data, and another 17 million worldwide.
Not only is my e-mail filled with expressions of thanks, but it is also filled with tales of horror. One woman wrote that CFS left her homeless and she lived in a park for weeks; another wrote that she lives in a car that she is not well enough to drive. A West Virginia woman wrote to me because she could not find a doctor in the state who would treat her. A teenaged boy said his father thinks he very lazy, not very sick.
Some doctors try the old nostrum of exercise, which invariably brings on collapse in CFS patients. Others, including the British medical establishment, insist on treating a physical disease as a psychiatric disorder. I have heard from patients all over the world, but those in Britain are among the most pitiful. The National Health Service has favored low-cost psychiatry over high-cost internal medicine. The medical hell about which I write is without national borders.
I find the patients, who have e-mailed me and whom I have met, to be angry as well as desperate. They wonder why have they been abandoned? Why do other diseases get more attention when they have fewer sufferers? Why is the media so indifferent to them? Why does the government spend so, so little (about $6 million a year) on researching a cure?
All that is incontrovertibly known about CFS is that it is a disease of the immune system. It kills slowly through heart disease and cancer. It also has a high suicide rate.
There is a sore irony that nowadays HIV/AIDS, which affects 1.1. million people in the United States and 34 million worldwide, is almost without stigma and has many public advocates – and many celebrity advocates like pop superstar Elton John — raising money for research.
CFS patients feel they are stigmatized, and often are, as malingerers. Their only shining star is author Laura Hillenbrand, author of the bestsellers “Seabiscuit: An American Legend” and “Unbroken: A World War II Story of Survival, Resilience and Redemption” who has CFS and manages to work in a specially constructed bedroom with devoted family support. Her 1994 New Yorker article on CFS was a milestone in the literature of an affliction, also a love story.
Although probable CFS outbreaks can be traced back to at least the 19thcentury, it is still hidden in plain sight. One million CFS sufferers in the United States and millions more elsewhere will continue to suffer until society gets behind the moral imperative of researching a cure. The immediate needs are to comfort the sick, educate the doctors and shame the government.
Llewellyn King is executive producer and host of “White House Chronicle” on PBS. He is also the creator of the YouTube channel ME/CFSAlert. His e-mail is firstname.lastname@example.org.