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Search Results for: CFS

Getting a Seat at the Table

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Think of this as a primer for all of those, like the sufferers of the awful disease Chronic Fatigue Syndrome, who need to be heard in Washington and aren't. Silence has a price.
 
There are two branches of lobbying in Washington. The first is big lobbying, with big money making big campaign contributions. The second is everyday lobbying, which is quietly effective, scarcely organized and part of the fabric of decision-making. Call it "informational lobbying."
 
Congress cannot expected to be knowledgeable about a myriad of issues, and this is where the lobbyists perform their often more innocent function. Simply, they know stuff. Their advice isn't always objective, but it's informed.
 
Certainly, Congress has the best research available through the Congressional Research Service of the Library of Congress and all the executive branch agencies. But it's a lot easier to call a friend, where a question can be asked and answered in the vernacular: “Joe, what's the story on the helium shortage?” It can be argued that, at this level, lobbying is not suspect but efficient.
 
Proximity is a force in Washington, familiarity a lever. There are no fingerprints; it's how the system works. A chance meeting in a restaurant can change the course of policy; influence a congressional opinion about something obscure but important, like the Endangered Species  Act, which is now receiving attention on its 40th anniversary.
 
The indictment of this informal lobbying regime is not that it exists and works, but that if you aren't at the table, you won't be heard. Woe betide those who don't have a lobbying operation, however modest, in Washington.
 
The lobby-less must suffer in obscurity: no lobby means no input. No conversation after church or at a kid's soccer game means no information is spreading about actions and decisions that will have impact down the line.
Make no mistake, proximity means a lot in the informing of government. A few casual words will often trump a great academic study.
 
For the past several years, I've taken a keen interest in Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis. It's a disease associated with the suppression, for reasons unknown, of the immune system. To get it is to contract a life sentence of daily suffering, often so severe that patients can be bedridden for years. They think of themselves as “the damned.”
 
This community has issues with the federal government; specifically with the Department of Health and Human Services, which has oversight of the National Institutes of the Health. Yet the advocates for CFS — many of them superbly articulate – aren't heard in Washington.
 
This is very clear, at the moment, when the department, acting through the NIH, has signed a contract with the Institute of Medicine to, according to NIH, to develop “clinical diagnostic criteria” for CFS.
 
This has so enraged the top tier of 35 doctors and researchers in the field that they — risking good relations and future research funding — have written to HHS Secretary Kathleen Sibelius, imploring her to halt this folly. The Institute of Medicine doesn't have expertise in this field, according to the CFS doctors.
 
Most CFS specialists agree that an effective definition of the disease, known as the Canadian Consensus Criteria, is working fine and should be retained. Confusion and expense from Washington aren't needed. A wrong definition can be destructive to research, treatment and patient well-being. It will have consequences.
 
But the protests may have come too late, as knowledge of what the NIH was up to came too late.
 
To me, this bureaucratic shuffle by HHS is an example of the dangers of not having a presence in Washington. Government responds to pressure. No presence, no pressure, no result — or worse, a bad result.
 
You don't need huge money to lobby. Effective lobbying is often a case of simply being there and being known to be there: walking the halls of Congress catches the attention not only of Congress, but also wayward federal departments and the media. — For the Hearst-New York Times Syndicate

A Young Man, a Big Disease and a Big Idea

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We expect big ideas to come from young people in computers, social networking and music. In medicine, less so.
 
So meet Ryan Prior, age 23, of Atlanta, Ga. He suffers from a little understood but ghastly disease of the immune system known in the United States as Chronic Fatigue Syndrome (CFS), and in the rest of the world as Myalgic Encephalomyelitis (ME).
 
The disease is mostly incurable; affects men and women, but more women than men are recorded; and the Centers for Disease Control (CDC) in Atlanta says there are 1 million victims in the United States and 17 million worldwide.
 
Its impact is horrific; confiscating lives, wrecking homes, sundering love affairs and grinding down caregivers and families. For the most part, the sick are sick until they die. Some are bedridden for years. Advocacy groups say suicide is high. I have received many letters from patients who say they can't take the pain, the helplessness and the stigma any longer, and beg for a quick release.
 
Despite all this, the disease gets short shrift from the National Institutes of Health and the CDC, although patients say they get a better hearing at the Food and Drug Administration.
 
Enter the over-achieving young patient, Ryan Prior. His story begins on Oct. 22, 2006. Like many victims he knows exactly when he was felled, when normal life had to be abandoned. He entered a dark world where good times are marked in hours; where bad times are days, weeks or months in darkened, silent rooms.
 
Prior was student president at Warner Robins High School in Warner Robins, Ga. (about 90 miles south of Atlanta), captain of the cross-country team and was taking three advanced placement courses. “My goal was to attend Duke University or West Point with the ultimate goal of becoming an Army Ranger,” he said.
 
By Nov. 15, 2006, Prior had to quit school. Under a Georgia plan for educating sick students, “my physics teacher taught me heat transfer while I was lying on the couch,” he said. But he slept through calculus.
 
Ryan still hoped to make it as an athlete. During a brief respite, he was back on his soccer varsity squad. But it was a disaster. He had been put on a drug that provided a short energy boost. “I went to a practice and played for about five minutes. I did OK for the first minute. After five minutes, I realized I had to stagger off the field as soon as possible. If I didn't get off voluntarily, I knew I would have to be carried off soon after.”
 
After seeing 15 doctors, who knew little or nothing about the disease, Prior found one who has helped him. Now, he says, he functions 90 percent of the time if he takes 15 to 20 pills a day and avoids overdoing it. Ultimately, he graduated Phi Beta Kappa from the University of Georgia.
 
But it's the almost complete ignorance of CFS by most doctors that has set Prior on his big idea project. He is making a documentary film about the disease with young filmmakers, and with a $12,000 budget. He hopes the film will lead to $50,000 in funding to create “an eight-week summer fellowship program” for medical students, between their first and second years, to study with recognized experts in CFS. They would, according to Prior, provide each student with a stipend of $5,000 for the eight weeks.
 
Prior has compiled a list of nine doctors or clinics preeminent in the field who he believes would accept the fellows. The end result: a flow of young doctors with a knowledge of CFS and new ideas.
 
I can attest that this is desperately needed. As far as I have been able to determine there are many states, including West Virginia and Rhode Island, where there are no doctors with specialized knowledge of the disease. One woman travels from Delaware to Manhattan for treatment with Dr. Derek Enlander, and many have moved Nevada to be near Dr. Dan Peterson in Incline Village and the Whittemore-Peterson Clinic in Reno.
 
If Prior's plan works, it may lead to a much larger training effort in the United States and across the world.
 
“The message is simple: American history has progressed in a logical line from women's rights, through civil rights, then to gay rights,” Prior says, adding, “Medical history has a similar process of ridicule, repression and ultimate acceptance: MS, AIDS, and now we want CFS to be the next step.”
 

A Drug Goes Down in a Perfect Storm

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A man you have never heard of is on a hunger strike in Reno, Nev., in a desperate petitioning of the government to do something to help bring a drug you have never heard of to some very sick people.
 
The man is Robert Miller, a former miner and bartender, who suffers from Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME). And the drug, which stimulates the immune system, is Ampligen.
 
Miller and the drug are at the heart of a perfect storm involving bureaucratic procedures, corporate ineptitude and a community of patients who have no Washington presence and therefore no strident voice.
 
Instead of a lobby, there are individuals — many of them very sick — who form a rag-tag pressure group, a small irregular army, who speak out on behalf of what is believed to be a million CFS sufferers in the United States.
 
The problems start with the disease itself, which like AIDS is a dramatic compromise of the immune system. It is hard to diagnose: There are no biological markers; there is no way to quickly identify it. Instead, it is what doctors call a waste-basket diagnosis: If it is not any of a list of ailments, then it must be CFS.
 
Some suffers report flu-like symptoms at the onset, building to a total collapse. Others simply collapse after exercise. Recovery is very rare — and only men. The disease undulates; good days and bad days, good years and bad years. In bad days and years, the victims are bedridden with intolerance of light and sound; restricted to bed and darkened rooms. Suicide is common, the suffering endless and severe.
 
I have talked to dozens of sufferers — the most heartrending are the teenage girls who are denied schooling, social life and the prospect of marriage by their ghastly affliction.
 
Enter Ampligen. It is an anti-viral compound developed in the 1970s and administered intravenously. Every patient is not helped by Ampligen, but many are restored to mobility after being bedridden. Robert Miller is one of these.
 
Last December, the Food and Drug Administration (FDA) heard from more than 700 patients praising Ampligen, with accounts of the choice it presented for them between functioning or being dependent on others.
 
Yet this month, the FDA rejected certification of the drug. The agency acknowledged the patient support, but castigated the company that makes Ampligen for incomplete data, a lack of scientific evidence of its efficacy and the way that it had handled the clinical trials.
 
There is a more-in-sorrow-than-in-anger tone in the FDA’s rejection of application for the drug by its maker Hemispherx Biopharma, Inc. of Philadelphia.
 
The FDA said: “As evidenced by the hundreds of letters, emails, and testimonies submitted to FDA, Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) is a devastating disease with a serious impact on quality of life. We are acutely aware of the seriousness of this disease, that no FDA approved treatments are available, and of the community's strong desire to see rintatolimod injection (Ampligen) approved.”
 
The bottom line is that the patients are to be denied a drug which helps some of them. Dr. Daniel Peterson of Simmaron Research in Incline Village, Nev., estimates that 70 percent of his patients are helped. Dr. Nancy Klimas of Nova Southeastern University in Florida, a dedicated supporter, puts the success rate lower.
 
For the patients, the dispute of methodology is irrelevant. What is relevant is that methodology has triumphed over humanity — and medicine.
 
Miller is continuing his hunger strike in the hope that the National Institutes of Health can be persuaded to conduct its own trials as, they can and do sometimes. But even if they do, it will be years before the FDA will rule again. — For the Hearst-New York Times Syndicate
 
 

Obamacare’s Silent Constituency

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In the end, as so often, it all came down to one person. In this case Chief Justice John Roberts.  He sided with the liberals enough to save the basic provisions of the Affordable Care Act.

In the tumult the wailing and the sighing, the gentlest of gentle sighs, inaudible to all but those who know, comes from the permanently sick, just-alive people who suffer from the immune system disease known as Chronic Fatigue Syndrome, called Myalgic Encephalomyelitis in much of the world. This is a disease little understood and under-researched, which it is believed afflicts 1 million Americans.

It is a disease that has no mercy. It is almost without exception a life sentence, robbing the victim of normalcy. Its symptoms include total collapse after exertion, especially after exercise; sleep that does not refresh; periods of months or years of being bedridden with pain from bones “that feel as though they are exploding,” according one victim, Lynda Haight; and a mental fog that makes the simplest task, like paying bills, too difficult many days. Other symptoms include extreme sensitivity to light, noise and normal city and suburban noise.

To this community of the lost, this cohort of hopelessness, Obamacare is a blessing; a small blessing but one that may grow in time when a cure is found, or at least when a therapy which relieves the suffering is developed.

These are the very people — sick, voiceless and hidden in in plain view – who have been shunned by insurance companies.

Those patients who contracted the disease in childhood have never been able to get insurance. They are the quintessential preexisting condition demographic. No room at Hippocrates Inn for them, even if they can afford it. Others have been dropped when they reach lifetime limits embedded in many policies.

Sadly, most of the expenses of those living this zombie life spend money not on being cured but being tested and using off-label drugs (drugs that are used for a purpose other than that for which they have been certified) in an endless search for partial, temporary relief.

Marly Silverman, a patient activist and director of PANDORA, a coalition of Chronic Fatigue Syndrome groups, said that had the Supreme Court decided otherwise, patients with chronic disease would have been forced back to uninsurable limbo.

For now, the apparent saving of Obamacare is a mercy for all the lifetime diseases. But it has a particular meaning for CFS sufferers because there is no easy diagnosis of the disease, and the patients often look quite well. It is a cruel irony that many CFS patients do not show signs ofbeing sick, so they are accused of sloth and malingering when they are as sick as can be.

Which is where the power of one comes in.

Women tell stories about devoted husbands — maybe the most famous being author Laura Hillenbrand’s. Also there are loyal wives who take up the burden, as in the case of Courtney Miller of Nevada, who is crusading for recognition for the disease that afflicts her husband Robert.

In other cases, lovers and spouses have taken the exits, leaving the prostrate to the additional suffering of loneliness and often poverty. Some sufferers are among the homeless. There many cases of victims living in cars and getting scant recognition or help from either the SocialSecurity Administration or doctors who take Medicaid patients.

John Roberts has become an important person in some very sad lives. For now he is the “one.”— For the Hearst-New York Times Syndicate

Florence Nightingale Still Comforting the Sick

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It is time to add May 12th to our list of dates worth commemorating — especially for 1 million in the United States who suffer from Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.

This year marks 192 years since Florence Nightingale’s birth in Florence, Italy to wealthy English parents. As a young woman, she felt herself called to take up nursing. Later, her heroic work caring for wounded British soldiers during dark nights of the Crimean War earned her worldwide fame as "The Lady of the Lamp.”

Nightingale is given credit for inventing secular and modern nursing because she recognized that troops were dying, not just from their untreated wounds, but also from malnutrition and dehydration.

She followed up her war work by writing a landmark text for nurses and founding a training school in London. Her natural talent for numbers helped her keep detailed data on patients, and she ultimately won extra renown as a statistician.

But from 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers here and abroad (17 million) commemorate her birthday as a kind of rallying point; their own lamp in the dark.

And the world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead,” she said.

Everything about CFS is controversial. It has been on the medical agenda since 1934, when there was an outbreak centered on a Los Angeles hospital. Currently 63 outbreaks have been documented, but still what is not known dwarfs what is known.

What is known is that it is a disease of the immune system, related to and in some cases overlapping fibromyalgia, a disease of the muscles. It also involves the neurologic and endocrine systems. The disease has broken out in startling clusters – locations in Nevada, Florida, New York and California among others just in the 1980s.

Its deadliness is slow and subtle. Studies suggest that it takes 20-25 years off the average sufferer’s life, but there are no dramatic sudden deaths or gory symptoms to attract attention.

Expert virologists such as Columbia University’s Dr. Ian Lipkin agree that the disease may yet turn out to be viral. But the once-exciting report from the Whittemore Peterson Institute in Reno, Nev., targeting the XMRV retrovirus had to be retracted for faulty science.

Doctors are slow to diagnose CFS because if that is not the area of their practice, there is no easy diagnosis.

At present there are no bodily fluid tests, no imaging, no temperature transients. Nothing. Just very sick people; very, very sick people. Immune system studies, spinal fluid aberrations, and other biomarkers show promise and may be used to identify the disease some day.

Probably 75 percent of CFS victims start with some flu-like disease. Maybe 4 percent of people who come down with mononucleosis will get CFS.

Most sufferers' lives are turned upside down. Their first collapse comes without warning, usually following exercise.

Although memory and verbal-skills loss are often part of CFS, most victims remember exactly the day and time they were stricken. Laura Hillenbrand, who incredibly has written two best sellers, cannot leave her home and could not attend her own wedding.

Deborah Waroff, a New York writer has had CFS for 23 years. In September 2003 and all through 2004, she could do little more than lie on the living room couch. Waroff struggled back to the point of functioning a few hours a day. But two back surgeries in 2010 left her immune system at a record low level, and brought on another long-term collapse. She is back to two or three-hour spells of activity, but not on two consecutive days. “I've lost half of my adult life,” she says.

These stories are multiplied a million times. Being a victim can include abandonment by families, spouses and lovers, friends and colleagues, workplaces and insurance companies.

Florence Nightingale shone a light of hope from her lamp in the ghastly Crimean hospital wards. CFS sufferers hope that the spirit of Nightingale will shine a loving light into the darkness of their disease — lost as they are in plain sight of the world around them. – For the Hearst-New York Times Syndicate

Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood

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What's in a name? A great deal, if you suffer from one of the most awful long-term diseases that is widespread: chronic fatigue syndrome.

That name infuriates the patients, maybe 1 million in the United States and 17 million worldwide. It also infuriates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.

The Centers for Disease Control (CDC) in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (M.E.) is still in use in Europe and elsewhere, and is favored by patients.

The new name fast became despised because “it trivializes the disease and misleads people,” in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.

Part of the misleading, as Jason and numerous other medical professionals have claimed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This, it is alleged, obscures the central unsolved mystery of CFC and its AIDS-like misery. And it hugely diverts government funding away from serious biomedical research. Jason and his colleagues believe that the most promising lines of investigation — pathogens, including a retrovirus called XMRV — are being under-researched in the process.

Although it has been around for centuries, and variously labeled, the modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough — nearly 300 — to worry public-health officials.

Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no treatment and no clue as to the path of the contagion: Was it airborne or food-borne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?

None of those questions have been answered. What is known is that the disease appears in clusters and, more often, in isolated cases. It has spread in families, making it frightening; but the spread is occasional, not automatic.

The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public-health authorities.

The CDC sent two young epidemiologists to investigate the outbreak—Gary Holmes and Jon Kaplan. They estimated sufferers at perhaps 20,000 throughout the United States, a majority women of whom were women.

In the same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of fewer than 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, becoming somewhat of a Nelson Mandela in the field.

Over the years, the disease kept on popping up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Dr. Anthony Komaroff published a report about increasingly significant numbers in his Boston practice — the first evidence of what is now a quarter century of his CFS research. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.

The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.

Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 that there were about 1 million sufferers in the United States.

They also found that the disease was caused by an unknown pathogen but was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.

For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission — sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, it is full onset: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches — often years, sometimes decades — of almost total helplessness. It is goodbye to the life you have known; to work, to hobbies, to lovers and spouses, to everything short of hope.


Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends — some from her days at Harvard, a few from childhood, a handful from work — sustain her with telephone calls, when she can answer the phone, and some come by. Nonetheless, the brutal loneliness is always there.

Waroff was first felled at the end of July 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.

Gradually, with help from a caring doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms — more mixed-up speech, stumbles and almost falls, dizziness, rising fevers. Afterward, she would be immobilized for days.

Then things got worse.

In September 2003, Waroff woke up to find that she was too weak to fill out a simple form — just to renew library books – and fax it. That was the beginning of month after month of near-death incapacity. “I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in.”

CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (like HHV-6 and Epstein-Barr), swelling of the lymph nodes, muscle ache and other pain, dysphasia (the inability to use the right words) and general cognitive failure, nausea and faintness.


Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way though life.

When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists — that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the well-reviewed and sweet book, “The Sound of a Wild Snail Eating.”

The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, “Seabiscuit: An American Legend” and “Unbroken: A World War II Story of Survival.”

Hillenbrand's achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.

Statistically two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering, being lazy and not wanting to work. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.

Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had.

The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.

The medical establishment has been cool to WPI; and NIH turned down all six research grant applications it made last year. But 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call M.E./CFS in deference to the older, less trivializing name.

While these things are argued, the life in limbo that so many endure is described by Waroff this way: “You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time.”

Squabbling Experts, Suffering Patients

As with other investigative science, the search for a cure for chronic fatigue syndrome (CFS) is riddled with controversy, accusations and suspicion. The patient community believes, with seeming unanimity, that the medical institutions have failed them globally – namely America’s Centers for Disease Control (CDC) and the National Institutes of Health (NIH) and Britain’s National Health Service (NHS) They argue that the CDC discredited the disease, following the first big U.S. outbreak by giving it a misleading new name, chronic fatigue syndrome, and then shirking on research.

Among the alleged perfidy, the CDC first under-counted the number of U.S. sufferers at 20,000 and then over-counted them at 4 million. The count is crucial because when it was too low, resources were starved. And once it was set too high, test results became skewed because the CDC was including legions of clinically depressed people and others with psychological ailments, probably none of whom had CFS.

Nowhere is the counting more important than trying to establish whether it is the retrovirus XMRV that is the guilty pathogen in CFS. If the count is wrong and the patient cohort include people who have been misdiagnosed, the studies become a nonsense.

That is partially the case in Britain, where the NHS has been predisposed to treat CFS as a psychological disease and to dismiss studies which find XMRV in patients as contaminated, in particular by mouse DNA, which is present in the air of many laboratories that use mice in tests.

But the privately funded Whittemore Peterson Institute (WPI) in Reno, Nev. claims that they have never used mice and have guarded carefully against this possibility. Among the numerous test methods they used to thwart contamination, they hunted down antibodies to XMRV in patient blood, which cannot possibly have any connection to contamination. As WPI president Annette Whittemore points out, the real lab work includes finding genuine patients and extracting the elusive markers such as XMRV antibodies, making the work conclusive.

A recent article in the distinguished British medical journal, The Lancet, advocated cognitive therapy for CFS, such as improved diet and regular, paced exercise. The Internet lit up with denunciation. The consensus was that this was therapy for people who suffered from depression, not CFS.

The bottom line: This kind of commonsense therapy may help some, says Dr. David Bell, who has had more hands-on experience with CFS patients than any other medical professional, but it is not a cure or a breakthrough. What little is known is that different therapies work temporarily for different people: Deborah Waroff in New York has had some relief with ozone blood therapy; others, like Andrea Whittemore Goad in Reno, with Ampligen, an experimental drug; and still others with various immune-system boosters.

Those and other issues were debated at a NIH-sponsored conference, entitled “State of the Science,” on April 7-8. — Llewellyn King

This article was previously published by RealClearPolitics.

Chronic Fatigue Syndrome to Get Web Television Presence

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A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as “the living death” disease. The disease also is known by its old name — and the one favored by many patients — myalgic encephalomyelitis.

The program is called “M.E./CFS Alert” and can be accessed on the You Tube Channel ME CFSAlert. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program “White House Chronicle.”

The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.

“This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds,” Waroff said.

An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.

Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.

The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.

“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS,” King said.

The first program is an interview with pioneering M.E./CFS doctor Derek Enlander.

Chronic Fatigue Syndrome: Lives Interrupted

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In 2010, I made more friends than in all of my life. They are scattered across the United States and around the world. But for their sake, I wish they had never heard of me.

Sadly, my new friends know me only because I have taken up their cause. I have written and broadcast about their plight, and they have responded by pouring out their hearts to me.

For very minor service, I have received more gratitude, more praise and more life stories than from anything I have written or broadcast in five decades in journalism.

My sad, suffering new friends are victims of a grossly misnamed disease: chronic fatigue syndrome (CFS). It was once known more robustly as myalgic encephalomyelitis (ME), which at least suggests seriousness even if it isn't quite accurate. Myalgic describes pain in the joints and encephalomyelitis, inflammation in the brain and spinal cord. CFS has no known cure, and varies in intensity during the sufferer's lifetime.

In 1988, the Centers for Disease Control named the disease chronic fatigue syndrome after an outbreak in 1985 at the Incline Village resort on Lake Tahoe, Nev.

As far back as the 18th century there were recorded outbreaks of the disease, which was given various given names. In 1955, there was a major outbreak at the Royal Free Hospital in London.

The 300-case cluster in Nevada is generally recognized to be the largest in the United States. The second-largest cluster occurred in Lyndonville, NY, a northwestern hamlet where 216 cases were confirmed in a population of fewer than 1,000, also in l985.

A Lyndonville physician, David Bell, is regarded as one of the true experts on CFS, as well as one of the most dispassionate in the controversies that swirl around the disease. Bell has resisted pressure from both the medical establishment and patients' groups while retaining their respect.

As I see it, there are four controversies that plague discussion, research and therapies:

  • Is it a psychological disease with severe physical manifestations (a diagnosis favored by the British medical establishment)?

  • Is it caused by the new retrovirus XMRV (first spotted in prostate cancers) as some researchers believe, and nearly all the 1 million patients in the United States pray will lead to a cure?

  • Some charge there is a conspiracy in the medical establishment to downplay CFS out of guilt over past indifference, or pressure from the psychiatric practitioners who are reluctant to surrender jurisdiction.

  • Others fear a threat to the general population — clusters confirm CFS is contagious. But the pathway of the pathogen (air, blood, sexual intercourse, surfaces, food) or how great the risk is unknown.

Thanks to the Harvey Whittemore family — daughter Andrea Whittemore Goad has been a CFS sufferer since childhood — some serious, privately-funded research is being done at the Whittemore Peterson Institute (WPI) in Reno, Nev.

It is from this institute that the most compelling evidence of a retroviral role in CFS has originated. But recently, it has been refuted by British scientists who claim there was contamination in the tests, skewing the results.

Dr. Judith Mikovits of WPI rejects the British conclusions of contamination. She is very confident that she has found XMRV present in a majority of CFS patients, contending that she has used four methods of analysis against one in Britain.

Bell, the hands-on doctor from New York, told me he believes the virus is present. Yet only when XMRV is irrefutably proven to be to blame can the search for a cure take shape.

These are among issues that will be discussed on April 6-7 at a “state of the science” meeting at the National Institutes of Health in Bethesda, Md. But there is no expectation that anything very new will be revealed as the debate rages daily on the Internet.

Deborah Waroff, a gifted New York City author, former securities analyst and CFS sufferer for 22 years, tells the story of her first attack this way: “I have no idea how I got it. I had the symptoms of flu. After a week, thinking I was pretty well, I went back to my normal activities like biking and tennis. Then after a week, I was sick again. This repeated several times that summer [1989], until I got to a point where I was never well again. After a little activity, I would collapse, fold up.” Often, Waroff is bedridden, and nothing has improved permanently.

Her symptoms were classic; fever, dizziness, stomach upset, swollen lymph glands and frequent headaches. She developed cognitive problems such as putting the wrong words in sentences, known as dysphasia.

Waroff introduced me to my new friends and their terrible witness to suffering, abandonment and medical indifference. Their families break up, their spouses and lovers drift off. Infected parents worry for their children. One correspondent told me that they are the “unburied dead.” Others said they were “living in coffins.”

They have no celebrity spokesperson. They have no Washington lobby fighting for research dollars. They have no hope that a cure is just around the corner; and little confidence that government research organizations are trying hard enough, if at all, to find one. To know them is to peer into hell. — For the Hearst-New York Times Syndicate



Hearing from Those Who Suffer Mostly in Silence

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“There have been some medical schools in which somewhere along the assembly line, a faculty member has informed the students, not so much by what he said but by what he did, that there is an intimate relation between curing and caring.”

So remarked Ashley Montague, the British-American anthropologist and humanist.

The millions who suffer from what is termed Chronic Fatigue Syndrome in the United States, and Myalgic Encephalomyelitis in the rest of the world, await day that the medical establishment cares enough about the disease to cure it.

They await that day with an anxiousness that is unimaginable to those who have not been afflicted by the disease.

The two commentaries on CFS/ME that Llewellyn King wrote for the Hearst-New York Times Syndicate (and posted on this Web site) have elicited a terrible cry from the afflicted, including a woman who called herself “an unburied corpse.”

These cries called out for a special edition of “White House Chronicle” on CFS. That edition, featuring Deborah Waroff, a New York author, and Dr. Paul Plotz, a National Institutes of Health clinician scientist, first aired on television Oct. 8, 2010.

“I hope the television special and my syndicated columns push the National Institutes of Health and the Centers for Disease Control, and its political masters, to take action on this life-robbing disease,” said King, executive producer and host of “White House Chronicle.”

Here are some of the viewer responses to the CFS/ME special that we have received so far:

From: Terry

Thank you so much for your broadcast featuring ME/CFS.

I am a Canadian ME/CFS patient who has suffered from this disease for over 12 years. I am involved in research looking to see if there is a connection between the newly discovered XMRV retrovirus and neuropsychiatric disease in my child. The thought is XMRV may have been passed onto my child by me and played a role in expression of her condition.

I am waiting for general XMRV research to learn if the retrovirus played a role in cancer I was diagnosed with four years ago as well. I am wondering if I will develop other cancers and wait anxiously to learn more about ME/CFS and cancer.

I would like to state here, in my experience, CFS/ME is not biologically benign, and highlighting CFS/ME on your show is significant. Perhaps you may help move research forward and thank you in advance for this.

I am immensely appreciative, since as you can imagine, I am anxious for research to help my family understand our poor state of health.

I am a most grateful U.S. neighbor.

 

From: Melinda

I can’t thank you enough for the attention you have brought to ME/CFS suffers.

I have had to deal many times with the ignorance and intolerance towards this illness. It is such an isolating illness and it is well and truly about time that more attention is given to it.

It would be so much easier to deal with if we had understanding and support.

Again thank you!

From: Cheryl


Thank you so very much for your willingness and openness to bring new light to ME/CFS on your show.

We need you. We are desperate to have our voices heard. I can only tell you from my experience that no one would want to have this horrible, life-stealing illness.


I was a very active social worker and church and community volunteer before contracting a virus in 2004 that never went away. It took so long to get an accurate diagnosis that by the time that I did, I was completely bedbound, not being able to leave my home for weeks at a time.

I have to travel over 1,000 miles for medical care, since I am unable to find a doctor here that believes me.


In January of this year, I had to crawl out of my bed to fight breast cancer. With a compromised immune system, I worry about it coming back and not being strong enough for more treatments.

Cancer was a breeze compared to the battles of ME/CFS–and I do not say that flippantly.


Please continue to bring this horrible illness and the injustices to the public. It is a crime against humanity to be made to suffer like this with no answers.


God bless you, Mr. King.

From: Karen

How is “epidemic” defined at the White House?

When is National XMRV Testing Day?

How much longer do you think I can hold out before Chronic Fatigue Syndrome induced dysautonomia shuts down a vital central nervous system?

The Awful Disease Washington Forgot

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In the end, as with so much else, the fight against disease leads to Washington. There are big diseases with big lobbies, like AIDS, Alzheimer’s, cancer, diabetes and heart. Their millions of sufferers have associations and lobbies to push for federal research money and to shape its expenditure. Most have their celebrity backers, like Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and Mary Tyler Moore for diabetes.

Big lobbies mean big federal dollars, the attention of the National Institutes of Health in Bethesda, Md., and the Centers for Disease Control in Atlanta. If the disease is the kind for which a single or series of silver bullets can produce a cure, Big Pharma comes in with big funding, in the hope that it can develop a lucrative line of medicines, patentable for long-term profits.

Yet there is a vast archipelago of diseases as cruel in their impact, horrible to bear and crying out for research that is not sporadic, underfunded or, through ignorance, misdirected.

One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government, abetted by other governments, of choosing this name over the older and more commanding name, myalgic encephalomyelitis.

CFS is not about a name game. It is about debilitation lasting decades, essentially from inception to death. It is about years of lost living, terrible joint pain and total collapse, as the immune system more or less shuts down. It is like some great constricting snake that denies its victims the final convulsion.

Enter Sen. Harry Reid (D-Nev.). While he is not generally regarded as a man on a horse these days, to CFS sufferers he is a figure of hope. He has stood up for CFS research.

This is not because the Senate majority leader sought to know a lot about a hard-to-understand and terrible affliction, but because CFS was found in two clusters in his home state. The largest outbreak was at Incline Village, Nev. In New York state, there is a cluster too.

In the 1980s government scientists looked at these clusters, but refused to accord them the respect the suffering deserves. It was then that the name was changed; “fatigue” was less politically incendiary than myalgic encephalomyelitis.

Incline Village is significant because it shows that CFS is infectious, or that it has environmental causes. The thinking is that while clearly not having a strong transmission path, it does happen.

Recently a sufferer in England wrote to The Daily Mail, saying that her husband, who had cared for her for nearly 20 years, had become infected. This is particularly serious in England, where the medical establishment has insisted on treating the disease as a psychological disorder, despite recent research suggesting strongly that it is retrovirus XMRV.

Now, at last, two world-famous pathogen hunters, Anthony Fauci of NIH, previously seen as a debunker of CFS science, and Ian Lipkin, a celebrity pathogen hunter, are heading a major safari into the dark world of retroviruses.

For the first time, the loose global network of sufferers–nobody knows how many there are in the world, but in the United States there could be as many as 800,000—are beginning to apply political pressure.

Their plight is pitiable. The full horror of the disease is described in a paper by Deborah Waroff, a gifted New York writer who was stricken in July 1989. An energetic cyclist, skier, squash and tennis player, Waroff wrote in a paper for a Washington conference:

“My sickness began with a flu-like illness. After a week, thinking I was pretty much well, I went back to my ordinary activities, like tennis and my biking. A week later, I was sick again. This repeated several times that summer until I soon got to a point where I was never well again. I had classic symptoms. After a little activity I would just collapse, totally fold up. I also had symptoms like fevers, dizziness, upset tummy, swollen lymph glands and a new type of frequent headache. I had cognitive problems embarrassingly often, including dysphasia—putting the wrong words in sentences. I was often too weak to talk on the phone, or after five minutes of talking I would fold.”

In 2003, things got worse. But two years later, Waroff regained some of her life through the controversial treatment of ozone therapy. This treatment cannot be prescribed in most states. Allowed in New York, it is hard to come by and expensive. Some other countries, particularly Canada, have been more committed to fighting CFS and the use of ozone therapy.

Harry Reid, and others, there is more work to be done.

:)