chronic illness

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.