Llewellyn King: Chronic Fatigue Syndrome takes victims hostage

  T.S. Eliot may have had it wrong: The cruelest months are November and December, when the holidays are upon us, not April. For those who are broken – broken in all the ways that people can be broken -- the holidays are a special hell.

The bedridden, the incarcerated, the mourners, the maimed from accidents, disease or wars, the heartbroken – either those who have had their hearts broken by lovers or others, or those who have had no one in their lives -- endure the holidays in anguish, hurting even more than the permanent hurt that has become their lives.

You may find the broken in the corners at parties, sitting glumly at the table. But the real suffering is unseen; the real sufferers cannot make it to the table – or dare not for fear that the outing will cost them later. The brave face can mask the deepest hurt.

They are the permanently sick. Those who will be sick today, sick tomorrow and sick in the next holiday season as they were in the last.

There are people who suffer constant illness in all the myriad ways that a body can be afflicted or fail. No afflicted cohort is more deserving of understanding than another; none has a greater call for science to redouble its efforts for a cure than another.

But the effort to find cures is woefully skewed by the institutions of medicine, by the pharmaceutical companies and by those diseases that have celebrity champions, informing the public and the politics of research institutions. Yes, there is always politics and so there are winners and losers. Celebrities can help: Elizabeth Taylor did so for AIDS, Jerry Lewis for Multiple Sclerosis, and Michael J. Fox is doing so for Parkinson’s disease.

I write and broadcast about one disease in particular, Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome. It is a disease largely orphaned by the medical community which has no test for it -- cannot say with assurance that a patient has it until months of debility validate that it is ME. In medical parlance, there are no biological markers. What is known is that it is almost certainly a disease of the immune system, and that there is no cure. It also has no celebrity benefactors and no lobby in Washington.

I think of it as a terrorist disease, which takes its patents hostage and confines them in an alternative world of muscle pain, headaches, diarrhea, dizziness, brain fog and almost permanent collapse. Some are  hurt by light, others by sound.

One sufferer says that having ME is like being an engine without fuel: Your tank is empty and you hurt in new and refined ways almost daily. Sufferers go through long periods of disability where they cannot function at all. “I thought I was already in my coffin,” another told me.

The joys are few and sometimes from little things, like a pet or nature observations. One sufferer, Elisabeth Tova Bailey, wrote a wonderful book, The Sound of a Wild Snail Eating. It is about the habits of a snail in a terrarium next to her bed, during two years of sustained collapse.

This is a disease that steals lives, chains them up in dungeons of despair where loneliness and suffering reach “excruciating proportions,” according to my colleague, Deborah Waroff, whose life was snatched by this disease 25 years ago. Together Waroff and I established a YouTube channel on ME, mecfsalert.

The loved ones, and the caregivers – if there are any -- are enslaved by this disease, seeing those they care about in a place where neither love nor medicine can reach them. Literally and figuratively, they must fluff the pillows once again and mouth the empty words -- lies really -- of encouragement that we all utter in the face of hopelessness. Those who live on their own, often in poverty and sloth they cannot ameliorate for themselves, suffer what one woman told me was such sustained loneliness that she prayed nightly for death.

Thanksgiving, Christmas, Hanukah, Kwanzaa and New Year's Eve are on the way. Sadly, while the rest of us are suffused with joy, the permanently ill take stock and find their lives are terribly wanting and isolated on the holidays.

Llewellyn King (lking@kingpublishing.com) is executive producer and host of “White House Chronicle” on PBS.