The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. The NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.ME/CFS takes healthy — often athletic — people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, “With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie.”From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, “first do no harm.” When people are in pain and despair, inaction is palpable harm.A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them. – For the Hearst-New York Times Syndicate
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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.”
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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.
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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 , 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
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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:
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.
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!
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.
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?
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