Chronic Fatigue Syndrome

The Deadly Hurt of Loneliness — It Kills

February 12, 2019 by Llewellyn King 6 Comments

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 Monster Disease Medical Schools Don’t Mention

August 3, 2018 by Llewellyn King 1 Comment

For 10 long years, I’ve been writing and broadcasting about Chronic Fatigue Syndrome, now called Myalgic Encephalomyelitis (ME).

Like all chronic diseases, it’s brutally unfair to the afflicted. But ME also can claim to have been unfairly treated by doctors and medical researchers, the pharmaceutical giants, and the politicians who control the flow of funding to the National Institutes of Health and the Centers for Disease Control, the nation’s medical research and health protection agencies.

Research into ME has been grossly underfunded for years. By government standards for other diseases, research funding for ME has been microscopic: It’s received $16 million this year, doubling the 2016 funding. Lyme disease, for example, has received roughly three times the federal funding.

ME is a lifetime affliction. I’ve now spent enough time with clinicians, patients and their families to know just how cruel it is. I’m most pained by the young who will suffer so long, missing all the joys of youth and the fulfillment that is life’s expectation.

Estimates vary on the number of sufferers, starting at 1 million in the United States and 17 million worldwide. However many there are, I can tell you that they suffer terribly.

Getting the disease is a life sentence without parole, commutation or pardon. One of the leading research doctors told me he would rather get cancer than ME. “With cancer, you have a chance of a cure or you die. With ME, you’re hopelessly sick,” he said.

I’ve received many emails from patients who wish for death. Some bring it about.

ME suppresses the immune system, and its most common manifestation is exercise intolerance. Fatigue is the most pervasive symptom, with sleep that doesn’t refresh.

In the most severe cases, patients are bedridden with extreme intolerance of light or sound. Others ride a rollercoaster of feeling slightly better or worse. Migraines and excruciating joint pain are other symptoms.

I was able to have one patient travel to Washington to appear on a television program and do a short radio broadcast. She paid the price she knew she’d have to pay: three days of bed rest.

Some suffers can manage very limited daily activity. But the ever-present cloud of fatigue is there: the dark truth that they’re in a different place than the rest of us.

In the last five years, advocacy groups have generated more interest in the disease in the medical research community, including the NIH, and the public. These vital volunteer groups include the Solve ME/CFS Initiative, the Open Medicine Foundation and #MEAction, created by Jennifer Brea, star of the movie “Unrest,” and PANDORAorg. There are also diligent state organizations, like the Massachusetts Cfids Association.

Yet a cure still eludes, as does any large understanding of ME among doctors and researchers in related fields. The first struggle for the afflicted is to find a doctor who knows what it is and can render a diagnosis. Many visit a dozen or more doctors before they find one who might know the cause of their suffering. There’s no biological marker.

Medical schools don’t include ME in their curricula: not even one lecture in most.

From clinicians in the field, like Dr. David Systrom of the Harvard Medical School and Brigham and Women’s Hospital and his colleague Michael VanElzakker of the Massachusetts General Hospital, the cry is going out to medical schools to inform students about the disease.

Finding a cure is of prime importance. But until that day, getting the word out is also hugely important.

Searching for a cure takes talent, genius and money. For medical schools to advise a new generation of doctors that there’s a monster out there who will one day come through the doors of their practices, is just good medical citizenship.

Hello, there, medical schools.

Photo by rawpixel on Unsplash

Congress to Hear From an Army of Very Sick Petitioners

April 13, 2018 by Llewellyn King 3 Comments

A different voice will be heard on Capitol Hill on May 12 to 15: a gentle, sad voice coming not from lobbyists or politicos but from an irregular army of sick people. It is a voice that has grown stronger in recent years but is still just a zephyr among the hurricane winds that blow in Congress. For Congress, it will be an invasion of sighs.

They will be on the Hill to petition their government for more research funding for the disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

They will not be coming with checks for campaign coffers, nor with partisan arguments, but simply to make their case that the federal government should put ME on a par with diseases of similar devastation and increase the minuscule funding. They also want Congress to use its bully pulpit to preach a message of urgency and need.

ME is not a new disease, but it has been one of the most neglected. Many believe Florence Nightingale, who was born on May 12, 1820, was a sufferer. The day of her birth has significance for sufferers and their caregivers.

ME is a mystery disease of the immune system, felling patients of all ages and both sexes.

Some are bedridden for a couple of years and then improve enough to partake in very limited activities, others languish and are totally dependent on families and charities. Some are hypersensitive to sound and light: I know about a young man who was forced to seek dark and quiet in a closet.

In California, Tom Camenzind, a former Stanford University student, lies in bed so physically incapacitated that he is only able to communicate by a sensor attached to his finger. Tom’s exceptional parents, Dorothy and Mark, allowed me to bring a television camera into his bedroom last year to help the cause.

Others manage somewhat better but are shackled to their illness, never able to escape it. A small amount of physical exercise can send them to bed for days, as can a night out with friends. There is no known cure and no easy identification of the disease.

To get the disease is to be imprisoned by it, to serve a life sentence without parole. Sufferers live and do not live; they endure brain fog, severe headaches, aching joints and exhaustion beyond comprehension.

I have been writing and broadcasting about ME for nine years and many correspondents tell me they pray not to wake up in the morning. Suicide rates are said to be high among the sufferers.

Anita Patton of Incline Village, Nevada, was struck down, as many are, in her prime, writes, “Thirty-two years ago, I came down with a viral disease that wiped out my energy and immune system.” She suffers to this day.

Like many other patients, Patton began a long odyssey in search of a diagnosis. Eventually she found Dr. Daniel Peterson, a clinician who has devoted his life to ME. She moved close to his practice.

Peterson has been treating Patton with Ampligen, an experimental and expensive drug. It has enabled her to function, so long as she gets regular infusions. But the hard-to-get drug is not a cure. It suppresses symptoms in a subset of patients and it, like every other aspect of this scientific enigma, needs study.

A volunteer organization, #MEAction, will hold demonstrations across the United States and the world May 12 under the rubric “Millions Missing.”

These will be followed by a serious lobbying effort May 15, led by the advocacy group SolveME/CFS Initiative. It already has signed up nearly 100 patients, caregivers and activists to call on members of Congress, asking for recognition and explaining that they suffer from a disease that has been described as hidden in plain sight. Visibility is the first step.

A Disease That Cries Out for Research as Many Suffer Silently

August 17, 2017 by Llewellyn King 5 Comments

Photo: Tom Camenzind, an ME/CFS patient, photographed at his home in San Ramon, Calif. / Credit: Linda Gasparello

All diseases are cruel, but some have a refined brutality all their own. One such is Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). It is a monster, often hidden in plain sight; the suffering it inflicts is limitless.

Tom Camenzind is a handsome young man who should be in the joyous throes of youth. A popular and gifted student at Stanford University, Tom was clearing the hurdles of academia with ease and grace. In January of his sophomore year, he caught a cold on campus. ME walked through some door, and stole his promising life.

Today Tom lies conscious but prone in his parents’ home in San Ramon, Calif. He is totally paralyzed and can only communicate with his parents, Mark and Dorothy, by pressure from his fingers on sensors. He cannot tolerate everyday sounds, light or touch.

When the sensor-activated bell sounds, Tom’s parents come rushing to his side. Mark is an engineer and Dorothy is a physician, and the strain of their son’s affliction on them is palpable. Tom cannot do anything, anything whatsoever, for himself. At 23 years old, he is on the threshold of life, but he cannot cross it. He breathes and thinks, but he cannot live his life.

Recently, I filmed the Camenzinds for a special edition of “White House Chronicle,” a weekly program that I produce and host for PBS and other broadcast outlets. It was made in conjunction with the Solve ME/CFS Initiative, a Los Angeles-based charity.

Tom’s agony, and that of 1 million in America and 17 million around the world, predominantly women, cries out in terrible, silent eloquence for a national research effort with international cooperation on ME/CFS – so that those who suffer, like Tom, can dare to hope.

Tom’s paralysis is extreme, but others suffer daily with extreme fatigue, headaches, muscle pain, dysphasia and light and sound intolerance. Normal work is impossible, as is maintaining ordinary family life. Precious few ME/CFS patients make a full recovery. My files contain letters from sufferers who beg for death. Suicide is common.

Yet the United States has never put the effort — read dollars — into ME/CFS that it deserves, that it needs, that one would expect. Previous administrations have spent a paltry $5 million a year on research on the disease. While that amount was due to rise to $15 million, there is no guarantee it will under the Trump administration. The Office of Management and Budget has proposed deep cuts in funding for the National Institutes of Health, the research agency.

Even the diagnosis of the disease is a challenge. There are no conventional biomarkers that can be found in body fluids. One certain but clumsy way of diagnosing it is by asking patients who are ambulatory to walk on a treadmill. If they collapse for one or more days, the diagnosis is positive.

Many suffer for years and cannot find a doctor who knows anything about the disease. The disease is not part of the curriculum in medical schools.

Most patients see many doctors and get many wrong diagnoses before they find a specialist – if they find one at all. Most states have no specialists.

For patients, costs are huge and help is slight. Lovers drift away, spouses give up, children are often thought to be lazy and are criticized by parents, siblings and teachers. Schools are baffled when active kids fall apart from ME.

Over the years, there have been efforts by private charities, like the Solve ME/CFS Initiative, to fund the research gap. But still missing is the government, the big foundations and Big Pharma.

Sadly, ME has no celebrity champions. AIDS had Elizabeth Taylor, Muscular Dystrophy has Jerry Lewis and Parkinson’s Disease has Michael J. Fox.

For Tom to come back to his life one day, money and research are needed now. Oh, so needed.

Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His e-mail is llewellynking1@gmail.com.

The People Who Give Us Gifts All Year — the Overcomers

December 23, 2016 by Llewellyn King 1 Comment

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!

Underwear Goes on the Outside for Charity

April 28, 2016 by Llewellyn King Leave a Comment

By Llewellyn King

Ronald Davis is a respected professor of biochemistry and genetics at Stanford University, and director of its Genome Technology Center. So why is a picture of him wearing his underwear over his pants superhero-style circulating on social media?

Davis is not alone. Others are joining in making themselves look ridiculous every day.

Looking silly for a serious cause

The answer is that Davis is a research scientist whose son is severely afflicted with Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome — a name that dismisses the severity of this little understood and understudied disease that has devastated the lives of perhaps 1 million Americans, and what are calculated to be 17 million people worldwide.

Taking a selfie with underwear worn over outerwear is a new campaign, “Undies on the Outside,” to raise money — desperately needed money — for research on ME. This money possibly should have come through the government years ago, but the principal medical research arm of the United States, the National Institutes of Health, has been parsimonious in funding ME down through the years. Only $5 million a year is devoted to the affliction.

Yet the sick are almost inevitably sentenced to a lifetime of unspeakable suffering — often being confined to bed for months at a time and sometimes years — in pain and hideous isolation. They tell their story on ME/CFSAlert, the YouTube channel that I co-founded.

ME is an equal-opportunity monster: It strikes all ages and both sexes. Dr. Jose Montoya of the Stanford University Medical Center describes it as ordering a “parallel life.”

One of my close friends, who has suffered from the disease for 25 years, is fairly typical in her adversity. She was an athletic woman with a passion for squash and cycling. She said that when she was afflicted she became “like a car that had run out of gas.” That was on good days.

My friend’s life went from one of accomplishment and fullness in all the ways that a life can go right to one of surviving on the margins. For two years, she was bedridden. Every type of exertion is followed by a kind of unreasonable punishment for just trying to be normal. Recently, we spent a few hours together and had lunch in a restaurant. The price she paid was being so sick for two days that she had to stay in bed.

Normal family life, work and simple enjoyments are prescribed by ME. I have been writing and broadcasting about it for five years, during which I have come to think of those who suffer day in and day out, essentially without hope, as the children of a lesser god, alive but denied the joys of being alive. Suicide rates are high, and my e-mail box is full of e-mails from people who say they wish they could die.

Symptoms vary from a patient who told me her limbs seemed to be exploding to many who suffer mental fog, known as dysphasia, and need hours to write a few simple sentences.

The “Undies on the Outside” challenge was devised by an Australian woman. It came from a party game of residents at cheetah rescue center in South Africa, who relieved the tedium of an evening by dressing up with their underwear over their outerwear. Years later one of those revelers, Kate Booker, now living in London, suffering from ME for 18 years, and bitterly aware of the paucity of funding globally for the disease, was inspired to work up a challenge to raise money.

Everyone photographed wearing their undies over their clothes is sending $10 to the Open Medicine Foundation in the Los Angeles area, and challenging three other people to do likewise. Booker chose the foundation because it is raising money for pure research into ME and is concentrating initially on finding a biomarker, so that people can be diagnosed and not thrown into medical limbo.

The Open Medicine Foundation is run by Linda Tannenbaum, whose adult daughter has been afflicted since she was a teenager.

It is especially sad that this disease seems only to be known and understood by those who have a family member or close friend who has been, as it were, taken from them while still being there, shuttered away in plain sight. — For InsideSources

Cancer ‘Moonshot’ Has Paltry Dollars, Losers

February 6, 2016 by Llewellyn King 3 Comments

By Llewellyn King

Whenever the government wants to be seen to be doing something huge, it invokes the Manhattan Project or the moon landing. So the new cancer initiative of the Obama administration is called the “moonshot.”

But it’s neither the equivalent of the Manhattan Project, which developed the atomic bomb during World War II, nor President Kennedy’s ambitious program to land a man on the moon, after the Russians appeared to have stolen a march with the launch of Sputnik, the first satellite in space.

Those programs succeeded because they were tremendous national commitments without regard to funding. The $1 billion in proposed funding for the “moonshot” cancer initiative is somewhere between modest and paltry. In the world of biomedical research, $1 billion simply doesn’t buy much.

The pharmaceutical industry estimates that it costs well over $1 billion to bring just one new drug to market. Cancer needs many drugs.

The lead agency in this new iteration of the war on cancer, declared in 1971, is the National Institutes of Health. It has an annual budget of $32 billion on which there are demands from many deserving fields of biomedical research besides cancer.

President Obama has asked Vice President Biden to lead the cancer moonshot effort. I’ve been with the vice president when he has talked about his commitment to the cause of cancer research and the death of his son, Beau, from brain cancer. His sincerity and his commitment to cancer research is palpable, but he won’t have the dollars to get the job done.

The biggest contribution to the research for a cancer cure may be the stimulation the moonshot will give to extant cancer efforts, but it’s not without a downside.

Many other diseases fear they may be undercut by the cancer initiative. In the world of biomedical research, there is finite funding and talent — and a new initiative tends to draw the best research minds. The top magnets for good biomedical researchers these days are cancer and AIDS, and many other deserving diseases lose out. Biomedical research requires stability, so that decades of a scientist’s life can be devoted to a single line of endeavor.

I follow one of the more obscure diseases, one that that has been pitiably starved of public and private funds: Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. Compared to any other disease affecting a large number of people (1 million victims of ME/CFS in the United States, according to the Centers For Disease Control), it has been funded so little by the government as to amount willful neglect. It receives a miniscule $5 million a year in funding.

Last year, after public and media pressure that has been applied for years, NIH Director Francis Collins announced that things would be rectified. But he didn’t mention a dollar figure; not when he made the announcement in October and not to date. No moonshot here, not even a Fourth of July firework.

Yet the suffering of those with ME/CFS is truly awful. I’ve been in the sick rooms and interviewed the few doctors who specialize in the disease, and the situation is one of unabated misery. Those who are the most affected can’t tolerate light or sound, and must pass their days in the silent dark. For years, one poor young man has had to take refuge from the disease in a modified closet. Others suffer from a world in which they’re punished for doing everyday things: A dinner with friends can mean days in bed for recovery.

There seems to be no light at the end of the victim’s physical pain and mental fog, despite decades of pleading from advocates and caregivers that some serious research be funded by NIH.

While we’ve been the world’s powerhouse in research in all sciences, biomedical is now being starved of research dollars. Recently America’s most revered virus hunter, Dr. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University’s Mailman School of Public Health, has had to resort to crowdfunding. He and his deputy, Dr. Mady Hornig, can be found on YouTube eating red-hot chili peppers in an attempt to raise money for their ME/CFS research.

Dollars in across-the-board biomedical research are falling when they should be rising. Recently, NIH’s budgets have been 25 percent smaller in constant dollars than they were in 2003.

Research pays. Most of it doesn’t yield dramatic stuff, like a moonshot, but rather solid, incremental gain. In science, incremental gain is the equivalent of compound interest. But it needs sustained funding. Not rhetoric. — For InsideSources

Holidays: The Pain in with the Glitter

December 17, 2015 by Llewellyn King 1 Comment

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 17^th-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

The Cruelty of the Holidays

November 23, 2014 by Llewellyn King Leave a Comment

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 adversely affected 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, Hanukkah, 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. — For the Hearst-New York Times Syndicate

May 12: A Disease Gets Its Day, but Who Cares?

May 8, 2014 by White House Chronicle 22 Comments

May 12 is not a day that is written into history. It is not a day when there will be, like clockwork, a presidential proclamation, or a moment of silence. Yet, for some, it is a day of recurring infamy.

Since 1992, it has been the day on which Myalgic Encephalomyelitis (ME) sufferers — and those who care for them– have marked the disease. It is, for these people, a day of sorrow, of remembrance and of yearning. They remember those who have died, or committed suicide.

They are angry — often too angry to be persuasive — that ME is not on the national radar. They are angry that after more than three decades, the federal government is still seeking to define the disease, which afflicts about 1 million people here and 17 million worldwide; that research funding, at $5 million, is so low that in the world of Washington expenditures, you practically need an electron microscope to find it; and that the suffering goes on unmitigated.

They are angry that the government, through the Centers for Disease Control, abandoned the old name, Myalgic Encephalomyelitis, in favor of the dismissive new name, Chronic Fatigue Syndrome. They believe this trivializes the disease, and favors those who want to define it as a psychological affliction rather than a real disease.

They are angry that distinguished researchers, like the virus hunter Dr. Ian Lipkin of the Columbia University Medical Center, has had to resort to crowdfunding to continue his work that might help ME patients.

Why does the ME community observe May 12? It is the birthday of Florence Nightingale, who may have suffered at the end of her life from a variant of ME.

So this May 12, Mary Dimmock, a mother of a suffering son, will endeavor to unfurl a banner made of pillowcases on the grass outside the U.S. Capitol. Her goal: Get recognition for the disease, so the long work of finding answers and a cure can be accelerated.

What is known is that ME is a disease of the immune system, and it starts with flu-like symptoms or with collapse after exercise. In extreme cases, as with Dimmock's 26-year-old son, Matt, the patient becomes almost totally incapacitated with mental fog, painful joints, terrible headaches, intestinal upset, and extreme sensitivity to sound and light. Matt Dimmock has to spend his days on a bed set up in a closet.

Patients go through periods of extreme debilitation for two or more years, sometimes recovering enough to function for several hours a day. What a healthy person would consider to be normal activity — like going to dinner or a movie with friends — can result in two days in bed for a ME patient.

Doctors, on the whole, know very little about the disease.

Mary Dimmock is an unlikely protester. She has presence: tall and distinguished. She is a scientist, who took early retirement from a large drug company to care for her son and has become an advocate for this disease, which has confiscated so many lives.

Although ME knows no age or gender, the National Institutes of Health (NIH) has lodged what little effort it makes under “women's health.” One patient said, “Maybe they think we are hysterical women, who are just making a fuss.”

Dimmock is the antithesis of an hysterical woman. She became an activist when she found, after her son fell ill four years ago, that where ME is concerned, the system is broken. She told me, “It has been profoundly disturbing to watch the world around my son, especially the medical community, ridicule and even brutalize him for believing that his disease is real and serious.”

Around the world, the ME story is the same: Doctors who do not know anything about the disease and governments that do not want to know anything about it, or want to believe, for economic reasons, that it is a psychosomatic affliction, when there is ample evidence that it is an immune system disease.

I have interviewed many patients, and some of the small coterie of doctors who are working on the disease. They all wish the Department of Health and Human Services would take a proactive role through its agencies, the NIH and the CDC. More and more dedicated researchers have been forced to turn to crowdfunding because the agencies of government, charged with the public health, have turned out to be selective in their sense of who is sick. — For the Hearst-New York Times Syndicate