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

Holidays: The Pain in with the Glitter

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By Llewellyn King

We all know about the dark side of the holidays: the pain of the lovelorn; the stress for the recovering alcoholic; the torment of parents who cannot provide gifts, even homes, for their children. Then there are those who bear loss: loss of employment, loss of a parent, loss of a partner and, most sad, loss of a child. And there are those who are shut-in, alone, and possibly hungry; others are in pain, physical pain that defies amelioration.

In the holiday season, my thoughts are about those who suffer from Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). Its sufferers are walled off in plain sight, jailed by a disease that has no known cure and promises only suffering — by the day, the month, the year, the decade.

The government estimates that as many as  1 million Americans and another 17 million people worldwide are imprisoned by ME. Little is known about it, and nothing about the causes. It is understood to be a disease of the immune system, but there are those who want to believe, and have convinced some governments, that it is a psychiatric affliction. It is easier for government institutions, like Britain’s National Health Service, to believe in psychiatric nostrums than to treat and research the terrible suffering of the sick, the physically sick.

ME patients can be bedridden for years, unable to tolerate light or sound, and must rely on families or friends for basic needs. Sometimes they may seem a little better, but they cannot do the things of normal life. They are vulnerable to collapse after exercise or just normal activity.

Patients tell me that they know too well what my friend, colleague and ME sufferer Deborah Waroff says is the excruciating loneliness that comes with the induced isolation. It is the kind of loneliness that moved the 17th-century English poet John Milton to say, “Loneliness is the first thing which God’s eye named, not good.”

How often can a caregiver ask, “How are you feeling?” when the answer is known; was known yesterday, last year, and the year before, going back decades.

One sufferer told me she thought, in the height of her suffering, that she was already dead and was in limbo. Many sufferers have written to me saying they pray that they will not wake in the morning.

Suicide rates are high. Surely, suicide must be preceded by a loneliness that cannot be imagined? ME victims – and I have interviewed or had correspondence with hundreds — feel that not only do they suffer from symptoms which vary from pain in the joints, a sense that their limbs are exploding, headaches and mental fog, but they also have debilitating fatigue. Deborah Waroff, who has suffered since 1989, says it is like being a car that has no gas: You press the accelerator and nothing happens.

She, like other victims, has to ration her social life: a dinner with friends will result in collapse, and two or more days in bed. Likewise, going to a movie or a family gathering. Sometimes just making a simple meal is too much, and results in a return to one’s lonely bed.

Doctors, once they have decided that a patient has the disease, and if they have any knowledge of it, prescribe a variety of drugs from antivirals to large doses of vitamins. Some help with some symptoms, some do not. Ryan Prior, a young man who has made a documentary movie about ME, “Forgotten Plague,” takes as many as 19 pills a day. He was a star athlete in high school before being stricken. Now he manages his activities with stringent care. He is one of the lucky ones.

My correspondents from around the globe write to me about many things, but the most constant is their loneliness, exacerbated by the holidays. Marriages fail, love affairs go by default, and one is terribly, awfully alone.

There is aching aloneness for them each day, while others laugh and love. Mother Teresa said, “Loneliness is the most terrible poverty.”

That poverty is part of this disease. — For InsideSources