Journalists do not expect thanks for their work. But in my 62-year career as a journalist, I have never received such an outpouring of thanks -- hundreds of emails -- as for the syndicated columns, radio and television programs that I have devoted to an understanding of Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
These profound thanks from sufferers in the United States and around the world inspired me and Deborah Waroff to launch ME/CFS Alert , a YouTube channel, in June 2011. The channel has become a lifeline for them -- many of whom are bedridden -- and for their caregivers, advocates, doctors and medical researchers.
There is no cure for ME, and there are no established therapies. There is just a lifetime of pain, dependence, disorientation, loneliness and unremitting suffering. The horror of this disease strains my ability to describe it.
Like all chronic diseases, ME is brutally unfair to the afflicted. But it also can claim to have been unfairly treated by doctors, medical researchers, pharmaceutical giants and 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.
The first ME/CFS Alert episode featured commentary by co-host Deborah Waroff, a New York author who has battled ME for 29 years. It also featured an interview with Dr. Derek Enlander, a pioneering researcher in therapies for ME.
The aim of ME/CFS Alert is to comfort the suffering, educate the doctors, and to shame the government into allocating more research dollars. There are more than 100 informative videos on the channel, consisting of interviews with doctors, medical researchers, patients and advocates, made possible with a $20,000 GoFundMe startup campaign.
But to continue making ME/CFS Alert videos, I seek your financial assistance. Any amount you wish to contribute will go directly into making these videos as helpful as possible to everyone afflicted with ME -- a disease which I have described as "hidden in plain sight."
I want ME/CFS Alert to continue to be a place where patients can learn about other patients living with the disease, advocacy group efforts, treatment options and medical research. And I hope it will be a place for the public to get to know, as I have come to, this valiant community.
If you know someone with this disease, you will know why I have given so much of my time and assets to it. I hope you can contribute to ME/CFS Alert.
Creator and Host
ME/CFS Alert on YouTube
I wrote this syndicated column for Valentine's Day. It is generating a lot of activity on social media. I'd like to share it with you.
The Deadly Hurt of Loneliness – It Kills
By Llewellyn King
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.
The latest episode of ME/CFS Alert on YouTube is an interview with Dr. Ronald Tompkins who has been heading a vast research effort on inflammation at the Massachusetts General Hospital, including its role in ME. He is, quite simply, a giant in the field.
Your continued support is appreciated.
There are two holiday seasons. There is the one of joy, the one I’m lucky to celebrate. And there is the one those who suffer all year endure. It is also the one their caregivers struggle through.
At the end of the year, no matter their religion, the lonely find themselves lonelier, the confined more boxed in, and the broken more irreparable. The holidays can shine with love and they also can hurt.
Those of us who don’t have Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome, can only lend our hearts to those who do. We can seek to comfort and tell them that we know what they’re going through, but we don’t know. We can look, but we can’t know the terrible incarceration mandated by the disease: the life sentence.
A word about caregivers: The families, lovers and friends who know that these dear people, so loved, exist in a cruelly unequal world, isolated by pain and immobility. They are the people who must draw from the well of compassion over and over: today, tomorrow, next week, next month and next year, on and on. We can all be compassionate for a while, but to care for another permanently is noble, saintly and hard, hard work.
There is a glimmer (Is that too strong a word?) on the horizon as the pace of research into ME has picked up in the last several years and as has funding, much of it raised privately, has increased, though the effort is still a bit incoherent.
While there is research, there is hope. Maybe a new discovery will transmute endless misery into glowing joy. Maybe it’ll be in the biology of the disease, maybe in a compound that will hold it at bay, and maybe in a cocktail of compounds.
One of the priceless bounties of this time of year is hope. It is almost the only salve for the pain.
When I was 19 years old in Rhodesia, which is now Zimbabwe, I was working on a weekly newspaper. One night, just before Christmas, one of the African pressmen caught his hand in the press and it was crushed, mangled, three fingers gone. I had to drive him to the hospital and I grabbed the linotype operator’s Morris Minor. After having persuaded the other African workers that they couldn’t all get into a small car, five of them and the victim squeezed in and I began driving through deserted streets the few miles to the hospital.
For the life of me, I didn’t know why the four workers were insistent on weighting down the car. Then they began to sing, and I knew. The whole way they sang pain songs in Shona (they were of the Shona tribe). The songs – dirges, if you will – were an ancient analgesic to help the injured man endure the pain as he headed toward the Western world of morphine and surgery.
I hope that all who suffer this season will find the equivalent of their song to help with the pain, physical and emotional.
Recently, I had the opportunity to interview David Tuller for ME/CFS Alert on YouTube. The interview, Episode 102, is available below and on the channel.
David has performed an invaluable service in battling British medical authorities over the now notorious PACE trials and their misinformation in recommending the treatment of Myalgic Encelphalomyelitis with graded exercise.
David, a former San Francisco Chronicle reporter, now at the University California, Berkeley, is well known for his ME articles and advocacy.
In the first part of our conversation, David explained the damage done by the PACE trials and their underlying implication that ME is a psychosomatic affliction, not a physical disease. He explained how the PACE trials results, published in The Lancet, the British medical journal, affected institutions as faraway as the Mayo Clinic and the Centers for Disease Control.
In the second part, David talked about interviewing two survivors of the first documented modern outbreak of ME at the Royal Free Hospital in London in 1955. This outbreak gave Myalgic Encephalomyelitis its name, he said.
Thank you so much Mr. King for all that you have done!
my son has CFS/ME... thank you for your advocacy... it’s heartbreaking to watch
Thank you Llewellyn and associates for not forgetting us, and for letting the world know about ME while we often cannot. We long for the cure. We also look forward to the time when the CFS moniker is dropped, a term for a completely different condition, a psych condition, that was convenient for the insurance companies and government to hang on ME patients in the beginning. They did likewise to diabetics in the beginning. Thanks to anyone considering helping with this mysterious immunological and neurological disorder that has robbed millions of their lives.
Thank you for all you do for us suffering MECFS.
why oh why cannot people sort this name out they are two different problems me is myalgic encephalomyelitis and cfs is invented to explain a sick building syndrome caused by many factors not the lest an attempt by the cdc to create confusion to save millions of dollars in welfare payments
Thank you for caring about this "invisible disease". I suffer immensely with this, and it is difficult to keep hoping for relief.