Prolific Canadian writer Nora Gold is afflicted with a mysterious disease, Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome), about which she has written a novella, “In Sickness and in Health.” Gold discusses how she is able to navigate her life and work through bouts of sickness with Host Llewellyn King.
Search Results for: CFS
Health benefits of Tai Chi for Covid long-haulers, ME/CFS, and other patients
Host Llewellyn King discusses how the practice of Tai Chi can help Covid long-haulers, ME/CFS and other patients with Lloyd Kelly, a Louisville, Kentucky-based artist and certified Tai Chi instructor.
Link between ME/CFS and Long Covid
Llewellyn King and Oved Amitay, president and CEO of the Solve ME/CFS Initiative, talk about Long Haul Covid and its relationship to Chronic Fatigue Syndrome, another hard-to-diagnose, debilitating disease, and the government role in research.
Long COVID Has a Baffling Sister: ME/CFS
Long COVID is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome.
For a decade, in broadcasts and newspaper columns, I have been detailing the agony of those who suffer from ME/CFS. My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease.
There are many sufferers, but how ME/CFS is contracted isn’t well understood. Over the years, research has been patchy. However, investigation at the National Institutes of Health has picked up and the disease now has measurable funding — and it is taken seriously in a way it never was earlier. In fact, it has been identified since 1955, when the Royal Free Hospital in London had a major outbreak. The disease had certainly been around much longer.
In the mid-198os, there were two big cluster outbreaks in the United States — one at Incline Village on Lake Tahoe in Nevada and the other in Lyndonville in northern New York. These led the Centers for Disease Control to name the disease “Chronic Fatigue Syndrome.”
The difficulty with ME/CFS is there are no biological markers. You can’t pop round to your local doctor and leave some blood and urine and, bingo! Bodily fluids yield no clues. That is why Harvard Medical School researcher Michael VanElzakker says the answer must lie in tissue.
ME/CFS patients suffer from exercise, noise and light intolerance, unrefreshing sleep, aching joints, brain fog, and a variety of other awful symptoms. Many are bedridden for days, weeks, months, and years.
In California, I visited a young man who had to leave college and was bedridden at his parents’ home. He couldn’t bear to be touched and communicated through sensors attached to his fingers.
In Maryland, I visited a teenage girl at her parents’ home. She had to wear sunglasses indoors and had to be propped up in a wheelchair during the brief time she could get out of bed each day.
In Rhode Island, I visited a young woman, who had a thriving career and social life in Texas, but now keeps company with her dogs at her parents’ home because she isn’t well enough to go out.
A friend in New York City weighs whether to go out to dinner (pre-pandemic) knowing that the exertion may cost her two days in bed.
I know a young man in Atlanta who is able to work, but he must take a cocktail of 20 pills to deal with his day.
Some ME/CFS sufferers get somewhat better. The instances of cure are few; of suicide, many.
Onset is often after exercise, and the first indications can be flu-like. Gradually, the horror of permanent, painful, lonely separation from the rest of the world dawns. Those without money or family support are in the most perilous condition.
Private groups — among them the Open Medicine Foundation, the Solve ME/CFS Initiative, and ME Action — have worked tirelessly to raise money and stimulate research. The debt owned them for their caring is immense. This has allowed dedicated researchers from Boston to Miami and from Los Angeles to Ontario to stay on the job when the government has been missing. Compared to other diseases, research on ME/CFS has been hugely underfunded.
Oved Amitay, chief executive officer of the Solve ME/CFS Initiative, says Long COVID gives researchers an opportunity to track the condition from onset and, importantly, to study its impact on the immune system – known to be compromised in ME/CFS. He is excited.
In December, Congress provided $1.5 billion in funding over four years for the NIH to support research into Long COVID. The ME/CFS research community is glad and somewhat anxious. Glad there will be more money for research, which will spill into ME/CFS, and worried that years of endeavor, hard lessons learned, and slow but hopeful progress will be washed away in a political roadshow full of flash.
Ever since I began following ME/CFS, people have stressed to me that more money is essential. But so are talented individuals and ideas.
Long COVID needs carefully thought-out proposals. If it is, in fact, a form of ME/CFS, it is a long sentence for innocent victims. I have received many emails from ME/CFS patients who pray nightly not to wake up in the morning. The disease is that awful.
A Holiday Message for ME/CFS Sufferers and Caregivers
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.
Yours warmly,
Llewellyn
Living with ME/CFS Tom Camenzind’s Story : White House Chronicle #9035
Host Llewellyn King travels to San Ramon, Calif., to interview a couple whose adult son suffers from Chronic Fatigue Syndrome and the head of a group searching for a cure.
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.
This program was made in conjunction with the Solve ME/CFS Initiative, a Los Angeles-based charity.
ME/CFS
CFS: One Disease and Its Costs
What would happen to health care if a million new patients with just one of many now incurable and largely untreated diseases flooded the system, relying on medicine that could cost $70,000?
It might happen. Actually, it’s more than desirable that it should happen.
In one instance, a million or more patients who suffer from the devastating, life-robbing disease known as Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis, struggle through days of almost total incapacitation, disorientation, pain and despair, clinging to hope that science will rescue them. All that’s known is that like AIDS, it’s a disease of the immune system.
The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering.
The mother of an afflicted teenager told me that for New Year, her daughter went out for amid celebration. That exertion cost her two weeks in bed.
My friend and colleague (we host a YouTube channel, mecfsalert), Deborah Waroff, a New York-based writer, has been afflicted for 23 years and has seen her life confiscated. Like other patients she lives in a prison of her body with painful memories of when she was well. The body hurts, the memory tortures. Sleep does not refresh and long hours in bed do not heal.
Sufferers, held together in their pain by the Internet, trade sad notes. Going the rounds now is Winston Churchill’s statement in old age his life was finished but not ended. One sufferer e-mails me that she prays every night that she won’t wake up in the morning.
Patients groups say suicide rates are high. Determining the morbidity rate is a challenge because sufferers die from opportunistic infections rather than from CFS. In this, and other ways, it resembles AIDS and diabetes.
So far, the burden has been carried more by families and loved ones than by the health care industry. This is because there is no diagnosis per se for CFS, and no cure.
Dr. Andreas Kogelnik of the Open Medicine Institute in Mountain View, Calif., says there are no “markers” for the disease. There is nothing in the blood, marrow or soft tissue that identifies the disease.
Therefore, diagnosing the disease is by elimination – a time-consuming undertaking that the present medical regime is ill-equipped to provide. “You can’t do much in 10 minutes,” Kolgelnik says, referring to average amount of time allotted to patients by doctors.
So this is a disease that, even without a cure, the medical establishment has already indicated that it cannot afford.
The matter of affordability, for example, has affected diagnosis and treatment severely in the United Kingdom. There the National Health Service, always struggling with budgets, has encouraged doctors to teat CFS as a psychosomatic condition related to depression. The patients hate this and only recently has the British Medical Research Council softened its position.
That other medical nostrum, diet and exercise, is favored in the UK, too, but not by patients. They write to me constantly pointing out that exercise is corporal punishment for them; a recipe for relapse.
With only under-funded research scattered across the country at clinics and universities, the picture is bleak. But there are two pinpricks of light: a Norwegian cancer drug, Rituxan, which has helped patients in Norway and Germany, and a drug that is still in clinical trials in the United States, Ampligen, which rebalances the immune system.
Even those who administer the drugs, like Dr. Derek Enlander in New York and Kogelnik in California, don’t hail them as panaceas but as hopeful pacesetters. Neither is available except to a few patients in trials. And cost? Ampligen costs about $25,000 for a year of treatment, and Rituxan comes in at a whopping $70,000.
A slew of other diseases await expensive cures. In the future health-care costs, no matter what the Supreme Court and the politicians do, are going to go up and up. To the sick and their families, any price is a small one.
For the Hearst-New York Times Syndicate.
CFS: How Snail Therapy Helped One Woman
One of my favorite Christmas activities is to enjoy a really good French meal. I start my indulgence with a hearty serving of escargot, defying my cardiologist.
But this year, I have declared a one-man moratorium on the eating of snails. My gluttony has been impaired for this and other visits to Chez Indulgence by a slim but compelling volume that makes you think differently about that humble creature: the woodland snail.
It is also a book for Christmas: a feel-good book about a sick woman and a lowly creature of the forest floor. You never feel sorry for the writer, even in her distress, and you feel joyful about the snail. You bond with it.
The book is “The Sound of a Wild Snail Eating” by Elisabeth Tova Bailey. It belongs in that category of books that, like tunes, becomes imprinted in your memory. Bailey’s book is not a work of fiction, and it is work of wonder.
Bailey, who used to be an outdoors woman and a professional gardener, was felled nearly 20 years ago by one of the least understood but most debilitating of diseases: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
“From where I lay, all life was out of reach,” Bailey writes in her book.
Nothing much is known about the disease, which afflicts about 1 million Americans. But there is recent evidence that it may be caused by the retrovirus XMRV.
My own research into CFS and hundreds of e-mails I have received reveal that sufferers have bad years, worse years and years of some improvement. One writer told me, “We are the living dead.” Others thought they had recovered, but fell back into the lonely painful abyss.
In Bailey’s worst year, a visitor put a woodland snail into a pot of violets and presented it to her. It was a whimsical gesture, but it may have saved her life by giving her an interest beyond dreaming of the life that could no longer be hers. Sometimes she was so ill, Bailey reports, that she could not turn over in her bed, so she watched the snail.
Later, she placed it (they are hermaphrodites) in a better home—a terrarium where it could go about its complicated life, which included audibly chewing squares of paper. She got attached to it and learned about its habits; its use of slime to get around; and its ability to fertilize its own eggs and bring forth young—an amazing 118 little snails — in this predator-free space.
As Bailey’s health improved, she began to research snails in general and to study the work of the extraordinary naturalists of the 19th century, mostly British, including Charles Darwin. In the book, Bailey quotes some wonderful observations from this rich period for the natural sciences.
Like Bailey, the 19th-century naturalists depended more on what they saw in the field rather than study in the laboratory. They found, for example, that even hermaphrodites love to make love; and if one snail gets amorous with another, the proceedings are protracted. Who would have thought?
Bailey does not dwell on her disease, but on the snail. In fact, the nature of the disease is not revealed until the epilogue.
The book is not a lament of life’s abounding injustices, nor is it full of humbug about the human spirit. It is an adventurous, fascinating investigation of a snail that comforted inadvertently as it went about its slimy business, habitat attached.
Bailey is a beautiful writer of the simple English sentence and an artful storyteller.
This is a book for Christmas because it makes one feel very good. Merry Christmas to all the snails of the earth – people, too.
CFS: To Suffering, Add Anger
I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.
Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis in many parts of the world, mostly strikes people in their thirties and forties. The disease begins with flu-like symptoms which are often a precursor to a full collapse, often after exercise.
The disease largely disables the immune system; and leads to joint and muscle pain, cognitive dissonance, memory loss, dysphasia and problems with simple math. Sufferers are often confined to bed for months, functioning at a substantially reduced capacity, where the simplest tasks become monumental.
CFS-afflicted authors describe taking years to finish projects that should have taken months. These include Hillary Johnson, whose book “Osler’s Web” is about CFS; Laura Hillenbrand, who wrote the bestseller “Sea Biscuit” while struggling with the disease; and Deborah Waroff, who is writing a book about the Jewish hero Sholom Schwartzbard, but who has found the task dragging on for years, working as she can between severe periods of disability, confined to bed.
The human suffering of both the afflicted and those close to them is incalculable in its awful impact. One woman who e-mailed me wrote: “When I became totally disabled seven years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of the medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse.”
One of the most hopeful of recent discoveries is also generating a collateral fear. The retrovirus XMRV has been found to be present in CFS patients and has led them to worry about transmitting the disease to family members. One woman who e-mailed me from Britain wrote that her husband contracted the disease after years of nursing her. Who, she asked, will look after them now?
A sufferer in Maryland wrote to me that she worries about her family. She and her husband decided to have a child. They were blessed with triplets – and the return of the mother’s disease. Now she worries for her husband and the three babies.
A man—one-third of victims are male, although the National Institutes of Health treats CFS as a woman’s disease–sums up the anger in the community towards the political establishment, and particularly the Centers for Disease Control which changed the name from Myalgic Encephalomyelitis, in a controversial action.
He wrote: “Washington didn’t so much forget – they were never told. The CDC swept it under the carpet, despite the fact that their main raison d’être is to investigate and sort epidemics of new diseases before they take hold. Now, because of the CDC’s wrongdoings, there are more than 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back.”
Breaking down the e-mails, I find these commonalities:
· Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.
· Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.
· Anger at the media and others for not taking CFS seriously enough.
· The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.
· Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.
I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.
There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars.
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