White House Chronicle

News Analysis With a Sense of Humor

The Deadly Hurt of Loneliness — It Kills

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For some Valentine’s Day is a day not of love but of profound, despairing loneliness. The candies, cards and flowers from kind people can sometimes serve to open a void of despair, a black hole of unhappiness for them. They are people made lonely through disease. Some lonely for life.

And loneliness kills. That is the brutal bottom line on several recent studies. One by insurance giant Cigna found widespread loneliness, with nearly half of Americans reporting they feel alone, isolated or left out at least some of the time. Releasing the study, Dr. Douglas Nemecek, the company’s chief medical officer for behavioral health, said, “Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity.”

I’m fortunate that I’ve seldom been lonely, and never for long. But I’m privy to some of the worst loneliness on the planet. I write and broadcast about those who suffer from Mylagic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome. It is a disease of the immune system, possibly related to Lyme Disease and Fibromyalgia.

Their disease produces loneliness that those who aren’t lonely can only look upon aghast. We can talk about ME, investigate it, try to understand it. But we can never fully understand its limitless duration.

ME is a disease maybe like none other. It has no easy diagnosis, no biological marker that can tell a physician what the trouble is. And when it’s diagnosed, there is no cure and no standard treatment to alleviate and suppress the symptoms.

Some patients get some help from some therapies. Recovery is very rare. It’s almost always a life sentence. For no known reason, more women than men suffer the disease.

Some find ozone infusion works, but it isn’t easy to access. Others get some relief from Ampligen, a very expensive drug which is classed as experimental.

Patients suffer variously and sometimes simultaneously from sleep that doesn’t refresh, brain fog (dysphasia), headache, joint pain, light sensitivity, sound sensitivity and, sometimes, complete paralysis. Unable to pin down the disease from the symptoms, doctors tend to shun patients and to say it is psychosomatic.

So many doctors, unable to spare the time and ignorant of the research on the subject, either discourage their patients or tell them, “It is in your head.”

Those old standbys, diet and exercise, don’t cut it. In fact, ME is exercise-intolerant. Sufferers are knocked out by any exercise other than minimal. Going out to lunch with friends or some other minor endeavor, like grocery shopping, can lead to collapse, with the patient confined to bed.

In fact, one of the only sure-fire ways of establishing a diagnosis is to put the patient on a treadmill. If reasonable exertion results in collapse, then that’s the proof.

Some treatment of symptoms helps some people. Ryan Prior, once a gifted student athlete, takes 19 pills a day and can work. He is a producer for CNN in Atlanta and made one of two U.S. movies about this disease, “Hidden Plague.” He has a created the Blue Ribbon Foundation, aimed at educating new physicians and medical students about the disease.

The other movie is “Unrest,” which is the life story of Jennifer Brea, a talented young woman whose suffering was recorded on home videos. It is an award-winning movie. Brea has delivered a TED talk on ME and continues to advocate as the disease allows.

Laura Hillenbrand wrote two bestselling, non-fiction books, “Seabiscuit” and “Unbroken,” while stricken. She has limited mobility and works in bed with her head raised, talking to people by phone and email. Stairs can be impossible for her.

I’ve received many heart-tearing emails from those who suffer, where spouses and lovers have given up the grinding toil of caregiving and abandoned their former partners. Some patients tell me they dream of death — a welcome release from their terrible days of pain and aloneness.

Suicide rates are believed to be high. But as the Centers for Disease Control doesn’t track suicide as a function of ME, there is no exact data.

What is needed is better-funded research, more doctors educated in the disease, and more attention to the pitiable shut-ins as they wait for a therapy breakthrough. Their loneliness is a punishment on top of a punishment, a life sentence in solitary.

 

— For InsideSources

The People Who Give Us Gifts All Year — the Overcomers

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Certain gifts are given to us year in and year out. They are the gifts that keep on giving and they come, to my mind, from people I call “The Overcomers.”

This Christmas week A.A. Gill, one of Britain’s most extraordinary newspaper columnists, died at the age of 62. Gill was nominally a food critic. He used that position as a launchpad for some of the most entertaining and acerbic writing anywhere.

His column in Britain’s The Sunday Times was a weekly joy. But Gill didn’t get there easily. First, he nearly died of alcoholism at the age of 30. He wrote a book about it.

Gill straightened out his drinking, but he never straightened out his awful spelling and severe dyslexia. He overcame them largely by phoning in his columns.

Gabriel Garcia Marquez, one of the greatest literary talents to come out of South America, struggled with terrible spelling that he detailed in his extraordinary autobiography, “Living to Tell the Tale.” But it didn’t stop him from authoring masterpieces like “One Hundred Years of Solitude” and “Love in the Time of Cholera.”

Willard Scott, who had a successful career in radio in the Washington market before making it as a personality and weatherman on NBC’s “Today” show, suffered acute stage fright. He testified before Congress so that his experience would help others.

But in my random selection of overcomers, the biggest is Laura Hillenbrand, the author of two nonfiction bestsellers, “Seabiscuit: An American Legend” and “Unbroken: A World War II Story of Survival, Resilience and Redemption.” Both were massive works of research and narrative writing.

The back story, though, is one of suffering, terrible unrelenting suffering. Hillenbrand is afflicted with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome.

This is a disease that knows no mercy; a life-sentence disease without a cure and no proven therapy. It punishes sufferers for any effort, even mild exercise, condemning them to bed, often for days. The symptoms are extreme fatigue, migraine headache, aching joints, hyper-sensitivity to light and sound, and dysphasia. Some patients are bedridden for years.

Hillenbrand missed her own wedding because she was unable to walk downstairs or to look down. Yet, this overcomer researched and wrote two extraordinary books. Just as important, in a seminal July 7, 2003, essay in The New Yorker, she told her own story, comforting fellow sufferers and prompting the medical world to take ME more seriously.

My favorite overcomer was a waiter at the National Press Club in Washington, known simply as Mr. Blue. He was a man of such innate dignity that everyone called him “Mister,” and no one seemed to know his first name.

Mr. Blue had had a hard life as an African- American with no education. In fact, he was illiterate, and I was one of the few to find out.

At the club in the 1970s, when I knew Blue, the waiters carried loose, paper checks on which members wrote their orders and club numbers. Blue survived by feats of memory, remembering who had written out which check by keeping them in order. One day, his system failed: He dropped his checks. Mr. Blue was distraught to tears.

Shame is a powerful censor and, like most censorship, it neither helps the sufferer, nor does it do anything for the body politic. No one wants to be famous for their inadequacies or their sickness. But going public comforts and is a gift. It is the gift, so important in the holidays, of saying: You are not alone.

In that spirit, I have to go public with this: I am, for a broadcaster, a bad sight-reader. I have mild dyslexia, and I’ve been humiliated by my terrible spelling all of my long life in journalism. Happy holidays!

CFS: To Suffering, Add Anger

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I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.

Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis in many parts of the world, mostly strikes people in their thirties and forties. The disease begins with flu-like symptoms which are often a precursor to a full collapse, often after exercise.

The disease largely disables the immune system; and leads to joint and muscle pain, cognitive dissonance, memory loss, dysphasia and problems with simple math. Sufferers are often confined to bed for months, functioning at a substantially reduced capacity, where the simplest tasks become monumental.

CFS-afflicted authors describe taking years to finish projects that should have taken months. These include Hillary Johnson, whose book “Osler’s Web” is about CFS; Laura Hillenbrand, who wrote the bestseller “Sea Biscuit” while struggling with the disease; and Deborah Waroff, who is writing a book about the Jewish hero Sholom Schwartzbard, but who has found the task dragging on for years, working as she can between severe periods of disability, confined to bed.

The human suffering of both the afflicted and those close to them is incalculable in its awful impact. One woman who e-mailed me wrote: “When I became totally disabled seven years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of the medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse.”

One of the most hopeful of recent discoveries is also generating a collateral fear. The retrovirus XMRV has been found to be present in CFS patients and has led them to worry about transmitting the disease to family members. One woman who e-mailed me from Britain wrote that her husband contracted the disease after years of nursing her. Who, she asked, will look after them now?

A sufferer in Maryland wrote to me that she worries about her family. She and her husband decided to have a child. They were blessed with triplets – and the return of the mother’s disease. Now she worries for her husband and the three babies.

A man—one-third of victims are male, although the National Institutes of Health treats CFS as a woman’s disease–sums up the anger in the community towards the political establishment, and particularly the Centers for Disease Control which changed the name from Myalgic Encephalomyelitis, in a controversial action.

He wrote: “Washington didn’t so much forget – they were never told. The CDC swept it under the carpet, despite the fact that their main raison d’être is to investigate and sort epidemics of new diseases before they take hold. Now, because of the CDC’s wrongdoings, there are more than 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back.”

Breaking down the e-mails, I find these commonalities:

· Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.

· Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.

· Anger at the media and others for not taking CFS seriously enough.

· The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.

· Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.

I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.

There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars.