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A Bold Proposal for a Suffering Community

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I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease. The manifesto states what I think should be done now.

And “now” is an important word.

There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space.

The gardener, looking at his enfeebled employer, swallowed and said, “But, sir, an oak tree takes a hundred years to grow.”

“Then you’d better plant it now, hadn’t you?” said Churchill.

During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes — on his paperwork for staff that read, “Action This Day.”

One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action. The second was how stingy public and private funding for research was then and is now.

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime — and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million. The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year.

I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in and year-out for nuclear fusion research — and I see nothing wrong with that.

But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable. To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to willful neglect; an abrogation of the high purposes of Hippocrates’ calling.

Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders. These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark.

The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops. These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then. Science needs certainty of support, both political and financial, to triumph.

The key is sustained funding; a splash here and a dash there just won’t do — it won’t do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding.

ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it.

It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowdfunding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg. Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science.

If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics. We almost humbled polio, and developed powerful drug therapies for AIDS. We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration. Why not for ME/CFS? Why not?

There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates.

The voices need to be heard widely, need to be channeled and need to be focused. A million points of light won’t do it. A laser, a great beam, will do it.

There are three principal reasons why these voices are not heard by those who need to hear them:

1. ME/CFS is a hard story for the media to grasp.

2. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson’s Disease.

3. ME/CFS has no presence in Washington.

Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take.

To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.

Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favorite restaurant of the powerful, and those who think they are powerful.

If your children attend one of the power schools, like St. Alban’s or Sidwell Friends, contacts can be made and deals can be done at the events. A friend of mine enlisted President Bill Clinton’s help for a cause because their children went to the same school.

It may strike you as banal, but it is the Washington political game. Learn to play it.

Washington is a society of people who are impressed with each other. It is important to be known. If you are invited to the annual White House Correspondents’ Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy.

Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system.

A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money. The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs.

Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government. The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal. But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles.

Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it. That currency is information.

Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker.

The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial. Research funding, above all, needs to be sustained at predictable levels.

The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development.

How much ME/CFS will need and for how long is an existential question. Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS.

In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be.

I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.

I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease’s funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others — have in Washington and the nation.

If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.

ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it. That Churchill oak needs to be planted now, and in sight of the U.S. Capitol.

Llewellyn King is the creator of ME/CFS Alert on YouTube, which he co-hosts with Deborah Waroff. Their video work is being supported through donations on the fundraising Web site GoFundMe.

 

The Shame of Biomedical Research in the U.S.

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When the dark shadow of incurable disease settles across a life, it is brightened only by the hope that science is on the job: The cavalry will come.
Horribly the cavalry — researchers in the big pharmaceutical companies and the government-run National Institutes of Health and the Centers for Disease Control — may not even have mounted.
 
New drug development is a murky business governed by huge risks, inertia, bureaucracy and politics.
 
I've been looking at the role of biomedical research and the development of new therapies and drugs through the lens of one disease, Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis. But it is symptomatic of the whole struggle for cures, which means funds. It is a peephole into a system in chaos; where good intentions, economic reality, public pressure, politics and bureaucratic apathy play a role in where the research dollars go.
 
I've been writing about CFS for several years now, so I understand the dilemmas those who are in charge of biomedical research in government and private industry face. It is a disease of the the immune system, like AIDS, but it is mostly a medical enigma. It is hard to diagnose because there are no normal markers in blood or urine. It prostrates its victims essentially for life. In its severest form, patients lie in bed in darkened rooms, often feeling that their bones are going to explode. It cries out for more research, as do many other little understood diseases.
 
A very small coterie of physicians — maybe not many more than 50 in the United States — specialize in CFS and have developed private clinics for research into alleviating therapies. None of them are set up to do major drug research in the way that pharmaceutical companies do.
 
Big Pharma — as the drug behemoths are known collectively — is at the heart of new drug development, aided by preceding biomedical research that takes place through government grants to researchers in universities, teaching hospitals and private clinics. It is a complex matrix.
 
A new drug can cost over $1.2 billion to develop. It is a very high-risk undertaking — maybe the riskiest investment decision made in the private sector is developing a new drug. It is also a tortuous undertaking.
 
First a target has to be selected where there is a large enough patient cohort to establish a market. Then the science begins. Diseases that are straightforward, in medical terms, edge out those where the causes may be multiple and the resolution may require a cocktail of drugs. Understandably, a rifle shot is more appealing than a shotgun blast. Eight out of 10 drugs fail and are abandoned at some point. The winners have to pay for the losers.
 
If, after years of research, a compound that may work is discovered, the laborious business of testing it on animals must precede human trials with control groups and years of analysis. Finally the drug must be approved by the Food and Drug Administration which looks for efficacy, safety, risk benefit and manufacturing stability.
 
Into this already difficult world of new drug development, enter the politicians.
 
Some believe private enterprise will shoulder all the risks and is the right place for research. Others don't understand the vital role that government research grants — administered by NIH and CDC — play in the development of biomedical knowledge: the essential precursor to new drugs and therapies. Its funding is on a see-saw; it was down under sequestration and funding is restored but not boosted under the new budget deals. It tops out at $29.9 billion, a decline of 25 percent since 2003, according to The Atlantic magazine.
 
Chronic Fatigue Syndrome — which has 1 million Americans suffering hopelessly every day — gets about $6 million a year from NIH. What's wrong with that largesse? Well, remember, it costs $1.2 billion to develop a new drug once the biomedical case is made. As they say, you do the math – and don't expect the cavalry to ride to the rescue anytime soon.
 
Across the board, researchers are dependent on government funds augmented by foundations and charitable giving. Yet biomedical research pays as a national investment. American drugs are an export commodity, the cost of healthcare is contained and, yes, the suffering is reduced even as life is extended. China, by the way, has said it will surpass the United States in actual biomedical research dollars in five years. — For the Hearst-New York Times Syndicate

David and Goliath, or, the Sick and the Bureaucracy

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Malcolm Gladwell, the New Yorker writer, has grown rich with a series of books exploring the sociological dimensions of success and failure. In his latest, “David and Goliath: Underdogs, Misfits and the Art of Battling Giants,” Gladwell celebrates the many Davids who triumphed over the odds because they were nimble and resourceful.
 
If he wants to observe a classic David-versus-Goliath rumble, Gladwell might want to go to Washington on Tuesday (Dec. 10). He will see a frail woman go up against the federal government with a humble petition and a small following of mostly very sick people.
 
Her name is Susan Kreutzer and she suffers from the debilitating and mysterious disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, which is the name patients favor.
 
Kreutzer and others will begin their demonstration at 9a.m. outside the headquarters of the Department of Health and Human Services on Independence Avenue, where she will hand over a petition. Then she will move up the street to Capitol Hill to demonstrate and hand-deliver petitions to members of Congress. She will end her day of petitioning her government outside the White House.
 
Kreutzer has no idea how many, if any, demonstrators will join her, but she assures me she has the required permits to demonstrate. Another time, only six demonstrators turned out,, but they unfurled a huge banner and stood on he street telling the oft-ignored story of their suffering to anyone who would listen.
 
Telling your story in Washington without a big-bucks lobbying firm or celebrity friends is not an easy assignment. Not only is there the high chance of being ignored but there is also the chance of being discounted as one of the apocalyptic “end of days” proselytizers, or those who believe the CIA has it in for them and who habitually assemble at the White House and elsewhere. In other words, it is easy to be dismissed as a “crazy.”
 
But Kreutzer, who will have a warm-up demonstration on Dec. 9 in San Francisco at the HHS offices there, believes in the strength of small voices, of a murmur in the cacophony of Washington petitioning. “I feel I have to do this,” she said.
 
This year, the victims of CFS are particularly upset with HHS and its dependent agency the National Institutes of Health. They are fuming at the decision of NIH to seek a new clinical definition of their disease, supplanting the Canadian Consensus Criteria, which has been the diagnostic gold standard for researchers who are deeply committed to finding a cure for a disease that affects as many as 1 million Americans and another 17 million people worldwide.
 
It is a disease that simply confiscates normal life and substitutes an existence in purgatory, where victims can be confined for decades until death. Sometimes they will be so sick they must lie in darkened rooms for months or years; sometimes they can function for a few hours a day, usually followed by collapse. Dysphasia — word confusion — increases. Lovers leave, spouses despair and the well of family compassion runs dry.
 
The first and major complaint of all those in researching the disease and those suffering from it is that NIH spends a trifling $6 million on this circle of hell that could have been invented by Dante.
 
The second and immediate source of anger laced with despair is that NIH has, apparently arbitrarily, decided to have the clinical definition of the disease reclassified by the Institute of Medicine and has diverted a precious $1 million to this purpose. Thirty-six leading researchers and physicians from the United States, risking retribution in funding, protested the move but were ignored. They were joined by colleagues from abroad, bringing the blue-ribbon protesters to 50.
 
Still nobody knows why the move to reclassify the disease. One school of thought is that NIH would like to abandon the current and well-accepted diagnostic criteria, known as the Canadian Consensus Criteria, in order to treat the disease as more of a mental one rather than a physical one.
 
I approached HHS for a comment and for a word with Dr. Howard Koh, the assistant secretary in charge, but have received no response.
 
Will this David, Susan Kreutzer, fell this Goliath, HHS? — 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

CFS: One Disease and Its Costs

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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.

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



CFS: How Snail Therapy Helped One Woman

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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.