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
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.
I'm delighted to be able to tell you that there's a new episode of ME/CFS Alert on YouTube. It's Episode 100 and is an interview with Robert Robitaille. Robert has done yeoman work with the government on behalf of his daughter Robie, featured in Episode 99, and others who suffer from ME in getting disability benefits from the government.
Those engaged in a battle for benefits will find his 18-month struggle with the Social Security bureaucracy interesting and, indeed, dispiriting. He points out how fast Massachusetts was to accept his daughter's condition compared to the federal government.
Robert also works with Massachusetts ME/CFS & FM Association and praises their support and enterprise
It's your generosity that makes these broadcasts possible. Thank you.
I'm glad to say that I've been able to post another episode of ME/CFS Alert on YouTube. It's the 99th episode since we began this journey. It's an interview with Robie Robitaille, who has been suffering with ME for 15 years. She is now 42.
Fou years ago, she realized that she was too sick to take care of herself. So she abandoned the life she had been living in Texas to move back home with her parents in Wrentham, MA.
She talks frankly about the terrible loneliness of the disease and the comfort that she gets from her four pets: two cats and two unusual dogs, Catahoula Leopard Dogs. She admits that she substitutes their warmth and affection for the lack of human company.
When I'm talking to her, as when I talk with so many patients, I feel there is an invisible membrane separating us -- the ME patient imprisioned by the other side, separate and unequal.
Patients like Robie are denied a full life, and are cruelly confined to just existing in a place of pain, exhaustion, dysphasia and isolation. The living hell they all know so well.
Thank you for your support which has made these first 99 episodes possible. Episode #100 will be posted in a couple of weeks.
ME/CFS Alert on YouTube, including the new episode, can be Googled easily.
Here's my latest article on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which has been distributed by the InsideSources syndicate to newspapers across the country. It makes an important point about the lack of doctors with any schooling whatsoever in the disease.
The Monster Disease Medical Schools Don’t Mention
By Llewellyn King
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 (NIH) 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 past 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 what they’re suffering from. 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.
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.