Discussion in 'Fibromyalgia Main Forum' started by fight4acure, Dec 23, 2009.

  1. fight4acure

    fight4acure Member

    Okay you brainiacs out there... There is something in the article posted in the collection of research articles that do not make sense to me. Please read the following article, and at the end I have the question.

    What is Chronic Fatigue Syndrome and How is XMRV Related?

    Chronic Fatigue Syndrome (CFS) has received relatively little consideration since it was first described in 1988, but the recent finding published in the prestigious journal Science showing an association between CFS and a retrovirus, XMRV has focused media and medical attention on this serious, devastating and debilitating neuroimmune condition. While there are some people with CFS (PWC) who are able to continue working and doing some of their activities of daily living, there are also many at the opposite end of the spectrum who are bed-ridden, completely disabled, and can’t even get to the bathroom without assistance. While CFS doesn’t kill many people, it does take away their lives and, in many cases, their livelihood.

    CFS affects anywhere between 1 and 4 million Americans, but many more may “carry” XMRV. It affects people of any age, race, or socioeconomic group. It most commonly affects women 20--50; women are affected about 4 times more commonly than men. In teens and children, the average age of onset is 11.5. As teens, males and females are equally affected, but males tend to do a little better after puberty, whereas females tend to do worse.

    While there are many middle-aged women who feel that they’re “tired all the time,” we have to distinguish between Chronic Fatigue SYNDROME and “chronic fatigue.” This confusion is because CFS was a poor name choice, akin to calling Parkinson’s disease “chronic shaking” or calling tuberculosis “chronic cough.” Other more appropriate names for CFS include the British choice myalgic encephalomyelitis (ME) and XAND (X Associated Neuroimmune Disease.)

    How can you tell if you have CFS or have fatigue for some other reason? Go through the check list below, print it out and take it to your doctor if necessary. It is most important to understand that the diagnosis of CFS is based upon having 4 or more of the following symptoms in addition to the first one (which is required for the diagnosis), and having no other medical problems to explain these symptoms. Currently, there is no “test” for CFS; it is what we call a “diagnosis of exclusion” which means that all other possible causes of your symptoms have to be ruled out before the diagnosis of CFS can be made.

    Dr. Donnica’s Decisionnaire for CFS

    I have had new, unexplained, persistent, or relapsing physical and mental fatigue for at least 6 months. This fatigue is not the result of ongoing exertion or another medical diagnosis; it is not relieved by appropriate rest. I have at least 4 of the following symptoms:

    Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity (“post exertional malaise”)

    Unrefreshing sleep, insomnia or excessive daytime sleepiness, despite sleeping for more than 9 hrs per night

    Substantial impairment of short-term memory or concentration, problems with my short-term memory, confusion, disorientation, “brain fog”; difficulty finding the right words or numbers

    Widespread or migratory muscle pain; pain in the joints (without swelling or redness); headaches of a new type, pattern or severity that don’t respond to OTC medicines

    Tender armpit and/or neck lymph nodes

    Persistent or frequent sore throats

    In addition to the symptoms of the case definition, many patients develop other symptoms commonly associated with CFS including:

    Neurally mediated hypotension or orthostatic intolerance

    Multiple chemical sensitivities

    New allergies or food intolerances

    Painful gastrointestinal symptoms similar to irritable bowel syndrome

    New onset of asthma

    Hypersensitivity to light (photophobia) or noise



    Low body temperature or intolerance to heat or cold

    Often feeling “feverish” (without an elevated body temperature) or having chills

    Inappropriate sweating

    Abnormal appetite or decreased sense of thirst

    (page 2 on website):

    What CFS is Not

    CFS is NOT “all in your head.” We have known for years that it clearly has a biological basis and the new findings associating it with the retrovirus XMRV (xenotropic murine leukemia-virus related virus) is just one more piece of evidence confirming that. While we do not yet know whether XMRV is a causative factor for CFS, a “piggy-back” virus, or a virus that PWC react differently to than others, we do know that CFS is NOT “psychosomatic” or a over-reaction to stress. We also know that CFS is NOT a manifestation of depression. How can we tell the difference? There are 3 principle distinguishing factors:

    People with depression classically lose interest in satisfaction from their social and previously enjoyed activities, while PWC desperately WANT to do social and “normal” activities of daily living, but can’t. . .or if they do, they pay the price for one or more days with a complete crash afterwards (post-exertional malaise.) If you asked a PWC what they would want to do if they became “well” tomorrow, they would generally have a long list of activities they longed to do. Someone with classic depression would be more likely to respond to this questions saying “I don’t know” or “I don’t care.” People with depression do not have persistent lymph nodes in their necks, persistent chronic sore throats, feel feverish, have night sweats or chills; PWC have these symptoms more often than not.

    If you take a thorough history, most people with CFS were NOT depressed when they first became ill with CFS or for some significant time thereafter. While many PWC later DEVELOP depression, it is clearly long after the onset of their illness. This is called co-morbid or secondary depression, very similar to the co-morbid depression developed by post heart-attack patients. As with those patients, patients with CFS do a little better when their depression is also treated, but just as the heart attack patient still has cardiac risk, they still have CFS.

    The recent data associating CFS and XMRV raises the critically important question about whether CFS is “contagious.” While many experts believe that CFS has an infectious etiology, we do know that it is not contagious in the typical sense. While we know that there have been at least 3 reported community “outbreaks” in the past 25 years, most PWC are isolated cases in their communities. While housemates and sexual partners of PWC may have a slightly increased risk of developing CFS, 80% of PWC have no known family history of CFS. We also know that XMRV is not transmitted in an airborne fashion (as is the flu, for example), but XMRV has been identified in the white blood cells of patients with XMRV, raising questions about the safety of our blood supply and whether XMRV can be sexually transmitted or passed in breast milk or other bodily fluids. This is clearly an issue the CDC needs to study imminently, especially in light of XMRV findings. In the meantime, PWC should NOT donate blood, primarily due to concerns for their own health, but also to be sure not to pass this onto others.


    Now please think of the idea of how they say that people can get this virus. Then think about what it said about the Incline Village breakout at Lake Tahoe about 30 years ago. If you read up on all of the research articles and study the Incline Village/CFS break-out story by looking that up online, you may see my confusion.

    Please let me know if you see it and try to guess what I'm confused about. I'm just trying to make some sense of this all.

    Fight2Educate! :)
  2. fight4acure

    fight4acure Member

    People thought this article was crazy and far fetched, but now look at what they've discovered about XMRV. Of course, give this to a doctor years ago, or even earlier this year, and they will act like you are paranoid or believe delusional stuff. Its not so delusional now! So, look at this below, and then read the article I first posted above this post, and look at how they say it is passed onto others. Then maybe you can guess my confusion?

    [This file contains materials from Crown Publishing Group about their new book about CFS, "Osler's Web" by Hillary Johnson. Below are: a press release; a letter to the media; an interview with author Hillary Johnson; and brief biographies of the "major players" that appear in the book.]


    Press release:

    In 1984-85, residents of a small village in Nevada were hit by a seemingly contagious, lingering illness that destroyed the lives of its sufferers. Similar cluster outbreaks were reported in Truckee, California, where a group of public school teachers was uniformly struck and disabled; in North Carolina, where 12 percent of an orchestra's players eventually succumbed to the malady; and in a small town in upstate New York, where large numbers of children suddenly became so sick for so long that their education was seriously compromised. Physical symptoms included incapacitating exhaustion, cognitive impairment that in its severe form mimicked AIDS dementia, and an accompanying drop in I.Q. Quality-of-life tests indicated that these people--and others like them--felt every day significantly the same as an AIDS patient feels two months before death.

    In OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Publishers, Inc., March 27, 1996), journalist Hillary Johnson scrutinizes the origins, emergence, and medical-community response to this bona fide disease, once trivialized as the "yuppie flu." "Those struck by Chronic Fatigue Syndrome (CFS) have suffered not only the devastation of the illness but also the abandonment and scorn of our federal health agencies and, in turn, the general public," says Johnson. "In doing the research for OSLER'S WEB, it became apparent to me that the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) took a position early on that CFS was a malady manufactured by neurotics and hypochondriacs. Theirs was a poorly conceived, knee-jerk response to an incredibly serious and complex public health crisis." Later, when the numbers of those falling ill seemed to be expanding rather than attenuating, many government scientists assumed that increased press coverage was creating copy-cat cases of the disease among hyper-suggestible people. "Despite mounting evidence that CFS is an immunological and neurological disease that can permanently disable," says Johnson, "scientists at the federal agencies continued to hold firm in their posture, in large part out of a desire to save themselves the embarrassment of admitting they were wrong." Unfortunately, this stance has created a climate that further punishes the CFS patient--from lack of insurance coverage for medical treatment of the disease, to employers who deny requests for disability, to families who abandon a sick member because the illness is "all in their head."

    OSLER'S WEB shows how our progress in understanding CFS has been hampered by the disdain that federal researchers hold for the observations of doctors who have years of experience treating CFS patients. "Researchers first heard about CFS from clinicians in Nevada and elsewhere who were stymied in their efforts to help the surge of CFS sufferers coming into their clinics," says Johnson. "These patients described extremely severe symptoms. Typically, they were people who had been among the most athletic and healthy in that doctor's practice. Over time, the most astute clinicians identified the 'signature' of a new disease." In 1985, two internists at Lake Tahoe in Nevada recognized this signature--an apparent viral syndrome resulting in long-term disability--in more than 100 patients in their practice, and appealed to the CDC for help. "From the time of their arrival in Nevada, the CDC researchers assumed an attitude of superiority in their dealings with both the patients and the doctors treating them," says Johnson. "They questioned the integrity of the victims, ignored opportunities to interview sufferers who fell outside of their 'yuppie' prejudices, and criticized the clinicians for being blinded by financial greed and/or their personal relationships with their patients." Not surprisingly, after a two-week visit, the CDC left town believing exactly what they had (admittedly) decided before arriving: CFS was a malady fabricated by malingerers who were simply ducking life's reponsibilities.

    OSLER'S WEB reports that, despite the fact that the CDC was ordered by Congress to further investigate CFS--and was given millions of dollars to do so--the organization took the money yet largely ignored the disease. "I find it rather incredible that a federal health agency created to track and curb outbreaks of disease not only neglected that duty but found great sport in patients and their problems," says Johnson. "CFS was mocked in the corridors of the CDC, and an assignment to investigate CFS was considered to be the death knell for one's career as a researcher." When, finally, an open-minded CDC scientist was put in charge of the agency's CFS research, he ended up taking early retirement from the job, out of fear that he would be fired for his insistence that it was an infectious disease. "This judgmental attitude was also displayed by the NIH," says Johnson. "Their scientist in charge of CFS research has used nearly one million taxpayer dollars per year for the last decade to generate highly questionable data which, with only a few exceptions, attempts to suggest that CFS is a kind of character defect or emotional failing rather than a medical disease."

    OSLER'S WEB also looks at the laboratory research that was conducted on CFS by independent scientists and clinical doctors intent on making a breakthrough; at the FDA's decision not to conduct further clinical trials on Ampligen, the first drug shown to reverse the effects of CFS; at why and how the nursing and aviation industries have been hit particularly hard by this disease; and at the work of the CFS patient support groups, who understandably feel that they are fighting a lonely battle.

    "In 1995, the CDC quietly announced to public health officials that CFS is an emerging epidemic, putting it on the same list as AIDS and antibiotic-resistant tuberculosis," says Johnson. "More than ten years after first hearing about CFS, our health agencies are finally beginning to acknowledge what hundreds of thousands of patients and their doctors have known for years--that Chronic Fatigue Syndrome is an incapacitating disease from which few recover. And although evidence about the disease's impact on the brain and immune system has been amassed by independent scientists, the shocking dearth of information about the cause and mode of transmission of CFS can be blamed on the government's decade of denial."

    OSLER'S WEB is an alternate selection of the Book of the Month Club.

    Hillary Johnson earned her B.A. in journalism from the University of California at Berkeley and received a masters degree in journalism from Columbia University. She has written for such publications as Life, Vanity Fair, and the Wall Street Journal. In 1987, she wrote a two-part article about CFS for Rolling Stone, which was nominated for a National Magazine Award in the reporting category. She spent nine years researching and writing OSLER'S WEB .

    OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson 736 pages *$30 *ISBN: 0-517-70353-X Crown Publishers, Inc. Publication date: March 27, 1996


    "Dear Producer" letter:

    "A relentless, meticulous, and highly persuasive expos^B by a journalist...a compelling, well-documented account." Kirkus Reviews December 1995 Dear Interviewer/Producer,

    For more than ten years, there has been a health epidemic hiding in plain sight, devastating the lives of more than two million Americans.

    Outrageously, the official response from our federal health agencies has been to ignore the clinical evidence and publicly characterize the victims of this crippling disease as "emotionally unstable."

    In OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown Publishers, Inc., March 27, 1996), veteran journalist Hillary Johnson investigates the explosive emergence--and transmission--of Chronic Fatigue Syndrome (CFS) in America, and, more alarmingly, the arrogance and indifference of the Centers for Disease Control and the National Institutes of Health in responding to this epidemic.

    After nine years of meticulous research--years spent interviewing the patients suffering with CFS and the doctors treating them, the researchers struggling to find a cause and a treatment, the key players at the CDC and the NIH, and scores of others--Johnson can discuss:

    The physical manifestations of CFS--anatomical holes in the brain; I.Q. losses of from twenty to forty points; a decline in "natural killer cells" in the blood, and more

    How CFS has been the fastest-rising disability claim in the U.S. for both sexes in the last five years

    Medical and anecdotal evidence that casual transmission of CFS exists in the workplace and in families

    Why--despite evidence to the contrary--CFS continues to be scoffed at as a fabricated, yuppie disease

    Why agencies created to protect us have failed to adequately investigate cluster outbreaks of CFS, while at the same time misappropriating research funds earmarked for this disease.

    Hillary Johnson will be touring nationwide for OSLER'S WEB; I have enclosed a tour schedule for your convenience. I look forward to speaking with you about an interview.


    Q&A with Hillary Johnson:


    Is chronic fatigue syndrome (CFS) an illness made up by emotionally troubled people, or is it a legitimate medical illness?

    Yes, it is absolutely a legitimate illness. In fact, studies show that CFS is among the most severe of all medical diseases known to man. In the last decade, there have been an abundance of scientific studies that prove CFS carries with it a large range of immunological abnormalities. In addition, scientists have shown that the disease causes significant brain problems, in the form of multiple small anatomical holes in the brain with concurrent I.Q. losses. Cognitive--or thinking--problems, including short- and long-term mem ory loss, inability to perform math calculations and to appropriately "process" visual-spatial relationships are just some of the problems CFS sufferers must cope with on a daily basis. Most recently, in 1995, cardiologists at Johns Hopkins demonstrated that CFS sufferers have a brain defect that results in abnormally low blood pressure and low blood volume throughout their bodies.

    Finally, although CFS has been repeatedly dismissed as a "yuppie disease," some studies show that the hardest hit segments of the population are blue collar workers and the poor. This disease does not respect class lines--everyone is at risk, including teenagers and even very young children.

    If CFS is for real, why does it get such a bad rap? Why do people think it's just a condition of lazy people and malingerers?

    The biggest single problem is the name, which not only fails to describe the severity of the disease but which actually inspires hostility toward the sufferer. People with CFS cannot get well merely by getting more sleep, or, conversely, by exercising more. As a matter of fact, telling CFS patients to force themselves to "go out and get the muscles working" is about the worst prescription; vigorous exercise only exacerbates the symptoms.

    You say CFS is more serious than the name implies. What do you mean?

    "Fatigue" is a most inadequate word in this case. There are elite-class marathon cyclists with this disease who can no longer walk to the corner; there are previously fit adults with CFS who are so weak they must shower while seated on lawn chairs. Many CFS sufferers are confined to wheelchairs, or to their beds. Once caught in the grip of this disease, there are days when brushing your teeth or raising a glass of water to your lips requires effort tantamount to pushing a boulder up a mountain. Most seriously, intellectual abilities are adversely affected. Commonly, the I.Q.s of CFS patients fall, sometimes dramatically. Severely ill CFS patients have all the symptoms of viral encephalopathy, including "ataxia," which means they cannot walk unaided because their brain and their limbs aren't communicating.

    What have the federal health agencies been doing about this problem?

    In 1984-85, a large number of people living in Incline Village, Nevada, were devastated by a mysterious, debilitating disease, now known to be Chronic Fatigue Syndrome. After a cursory investigation of the outbreak, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) have made little effort to aggressively research the disease. It was not until 1995--ten years later--that scientists at the CDC gave CFS a "Priority 1" listing among their "New and Reemerging Infectious Diseases" category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS is infectious.

    Is CFS contagious?

    There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the Centers for Disease Control from all over the country. A "cluster" is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, upstate New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by casual contact."

    Is there evidence for contagion outside these so-called "cluster epidemics?"

    Anecdotal reports from doctors who have specialized in the care of people with CFS report that some proportion of their patients come down with CFS after blood transfusions. A nurse who worked in a CFS-dedicated clinic acquired the disease after accidentally sticking herself with a needle used to draw blood from a CFS patient. There are also studies that suggest that the disease spreads among families--from spouse to spouse, parent to child, and sibling to sibling. Pediatrician David Bell found that, among families in the Lyndonville epidemic, the risk of acquiring CFS was greatly increased--by more than 50 percent--if at least one member of the family already suffered from the disease. In several Lydonville families, every member eventually fell ill.

    If this is true, why have our federal health agencies failed to take this seriously?

    There are several reasons. First, these agencies have not done their own studies on CFS transmission, and they typically have disdain for the studies performed by independent investigators. In addition, the government's primary CFS investigator at the NIH, Stephen Straus, has continually suggested the disease is a psychiatric problem, not a physical one, and he routinely discounts the research of those scientists who demonstrate otherwise. Finally, clinical expertise is paramount when attempting to understand new and emerging diseases, but, unfortunately, few researchers at the federal agencies are clinically oriented. They have generally shunned the observations of those clinicians with significant expertise in CFS, and this arrogance and misplaced pride on their part has served to harm patients.

    How many people actually have CFS?

    The best prevalence estimate was reported recently by a Harvard research team, who believed approximately two million Americans are suffering from this disease. That's four times as many as have multiple sclerosis. The Harvard group suggested an attack rate of 300 for every 100,000 Americans, a phenomenal number for such a disabling illness. During the height of the polio epidemic, in 1953, the attack rate of paralytic polio was 20 per 100,000 Americans.

    How long has CFS been around?

    CFS appears to be either a new disease entirely, arising concurrently with the AIDS epidemic, or else a much larger and more widespread outbreak of a disease that occurred in rare and isolated outbreaks in the 1930s, 1940s, and 1950s. The clinical descriptions of that older disease, which was called "epidemic neuromyasthenia," are similar in many ways to the malady the government today calls Chronic Fatigue Syndrome.

    What have researchers learned about the source of the symptoms?

    One of the earliest discoveries about CFS was that the immune system is dysfunctional. Later, researchers learned that approximately 80 percent of sufferers have multiple tiny, pencil-point sized lesions in their brain. More recently, sophisticated brain imaging techniques have revealed that the brain is damaged in this disease, not only from a physical standpoint, but also from a physiological standpoint--that is, the brain's functions are disordered: metabolism is abnormal, and there are regions of the brain that are not receiving adequate levels of blood.

    Why is it that people with CFS don't appear to be ill?

    The most severely ill CFS sufferers actually do look terribly ill; it's just that they are rarely seen because they are either hospitalized or home-bound. The more mainstream CFS sufferers commonly gain weight, remain coherent, and are able to sit upright and walk short distances--thus, on the surface, they don't fit the stereotype of the wasted, hollow-eyed sick person. You almost have to live with someone who has CFS to really understand the crippling impact of the disease. The CFS sufferer you encounter in the grocery store will probably have to spend the next day or next week in bed recovering from their excursion.

    Is CFS an epidemic?

    An epidemic is defined as an unusual occurrence of disease. What is so remarkable and disturbing about this one is that it is an epidemic hiding in plain sight. Despite clear evidence that CFS is an epidemic, the government health agencies responsible for tracking and curbing disease outbreaks have continually minimized this threat with bland reassurances to the public.

    What is the evidence you refer to?

    A few examples: I interviewed more than 500 doctors and bio-medical researchers in depth on this subject; most indicated to me that CFS was an entirely new and rapidly growing phenomenon in their clinical practices and research labs. In 1994, the largest carrier of private disability insurance in the country reported that CFS had been the fastest rising disability claim filed by both men and women in the previous five years. In addition, informal surveys suggest most people who suffer from CFS fell ill in the peak epidemic years of 1985-1990. The public's inquiries to the Centers for Disease Control for information about CFS have been so voluminous that, by the late 1980s, the agency was forced to hire additional staff to respond. In 1989, when such calls exceeded one thousand a month, they began to outnumber queries about AIDS ; by 1990, such calls numbered two thousand a month. Inquiries about CFS have for some years surpassed those about AIDS at the National Institutes of Health, as well. Finally, there are literally hundreds of support groups around the country--eighty of them in California, alone--with memberships totaling in the tens of thousands. Hardly any of these groups existed before 1986.

    How long does CFS last?

    Studies show full recovery is a rare event--somewhere in the 4 to 8 percent range. After five years, chances for full recovery are virtually nil. Many if not most CFS patients do get better over time--although "time" in this case means years. A proportion of CFS sufferers never improve, and some deteriorate. Doctors who see large numbers of CFS patients in their practices consider suicide to be the most common cause of death among those patients who fail to see improvement or, in fact, deteriorate.

    How did you get interested in this subject?

    In 1986, I fell ill with CFS myself. I had been a journalist all my professional life and was fascinated to learn that my problem was shared by hundreds of thousands of others. I wrote an article about the phenomenon for Rolling Stone magazine, where I was contributing editor, and a book contract followed. My experience with CFS has been like that of any other typical sufferer. Certainly, it is one reason I spent nine years writing a book that, had I been well, I probably could have written in three. The analogy would be the old man who walks to the post office every week or so for his mail--he gets there, but it takes him four hours instead of twenty minutes. I've adjusted to the problem and have learned to live with it. The great drama for me now is the fact that, ten years after the Nevada epidemic, there are, conservatively, two million people just like me, and that they have been forced to make the same adjustments in their lives, to a greater or lesser degree. At this stage, I think the question we should be asking is: Why have our federal health agencies been so cavalier in their handling of a disease that is so clearly a public health crisis?


    "Players" in the CFS drama:


    PAUL CHENEY-- A medical doctor with a Ph.D. in nuclear physics from Duke University, Cheney brought a physicist's ebullient inquisitiveness to the epidemic facing him in the affluent resort town of Incline Village, Nevada, in 1985. For the next ten years, Cheney pursued the mysteries of the disease with an intellectual passion that brought him into the conference rooms of the Centers for Disease Control, the National Institutes of Health, the prestigious Wistar Institute of Philadelphia, and to the lecterns of scientific meetings as far away as Rome and Kyoto.

    DANIEL PETERSON-- A laconic, independent-minded Midwesterner who was a partner, along with Paul Cheney, in the sole internal medicine practice in Incline Village when an epidemic of CFS hit there. While his partner pursued the pathogen that was causing the disease, Peterson, a clinician to his core, devoted years to the study of Ampligen--a drug that diminished the effects of the disease among many sufferers--only to watch the Food and Drug Administration quash further trials of Ampligen in 1991.

    ELAINE DeFREITAS-- An initially skeptical scientist who tried to deflect Paul Cheney's overtures to collaborate with him in his search for the cause of CFS. DeFreitas eventually turned her formidable intellect and the resources available to her at the Wistar Institute toward seeking the viral agent behind CFS. Although she eventually found fragments of a novel retrovirus in CFS sufferers, the CDC could not reproduce her work. DeFreitas insists (and agency scientists concede) that government researchers never followed her complicated protocol for finding the virus.

    DAVID BELL-- A Harvard-educated pediatrician whose life and practice in the tiny village of Lyndonville, New York (pop. 920), changed forever when an outbreak of CFS occurred among his young patients in 1985. In 1989, Bell joined the secret collaboration between Paul Cheney and Elaine DeFreitas, supplying hundreds of blood samples from the children's epidemic of Lyndonville to the Wistar scientist.

    WALTER GUNN-- A reluctant whistle-blower whose assignment as principal investigator into Chronic Fatigue Syndrome at the CDC thrust him into conflict with his colleagues when he suspected his superiors of misappropriating money provided by Congress to study the disease. The twenty-year agency veteran, who continues to support the CDC as an institution, took early retirement in 1991 in order to pursue his investigations into CFS independent of government scientists he considered too biased to conduct fair research.

    STEPHEN STRAUS-- A researcher at the National Institute of Allergy and Infectious Diseases (a division of the National Institutes of Health) who, in 1985, was one of the first scientists to describe CFS in a major medical journal. By 1989, Straus had undergone a sea change in his view of the disease, eventually becoming the chief architect of the "psychoneurotic" theory of CFS, a view he has barely modified over the course of the last seven years. Though he has been reviled by patient activists, Straus continues to be the most influential scientist working in the field by virtue of his NIH appointment.

    WILLIAM CARTER-- A scientist and co-inventor of Ampligen, an immune-modulating drug. HEM Pharmaceutical's multi-million dollar Ampligen clinical trial on ninety-two CFS sufferers demonstrated that the most severe effects of the disease could be reversed in a majority of sufferers. Carter's appeal to the Food and Drug Administration in 1991 for the opportunity to conduct expanded clinical trials was brushed off.

    MARC IVERSON-- At 27, the youngest vice president of Barclays America; at 28, an invalid with a disease no one around him believed was real. After his illness was diagnosed as "psychiatric" by the Mayo Clinic and Duke University, Iverson founded, in 1987, what would become the largest national CFS patient organization.

    MAYHUGH HORNE-- One of Pan Am's most experienced international pilots who came down with the disease while training to fly the Airbus in Toulouse, France, in 1984. Despite his severely disturbed cognitive abilities--he was unable to complete a pre-flight cockpit check, and crash landed on flight simulator tests--Pan Am refused to acknowledge Horne's illness and encouraged him to resume piloting the 747s he flew from Miami to South American cities. Eventually, Horne grounded himself; he is living on disability payments from the Social Security Administration.

    NANCY KAISER-- A housewife and former golf-enthusiast who, after ten years of severe illness, became "Patient 00"--the first CFS sufferer to receive Ampligen. The drug raised Kaiser's I.Q. from its depressed level of 85 to 135 and restored her ability to function normally--even to play golf. When the FDA denied the manufacturer's application for expanded clinical trials, however, HEM took its operations to Europe, and American patients like Kaiser were cut off from their lifeline. Kaiser is once more bedridden.

    EDWARD TAYLOR-- An independently wealthy Tulsa businessman and engineer who, when his wife Nancy was diagnosed with CFS in 1984, emerged as the most generous philanthropist in the CFS field, supplying researchers with the seed money necessary to amass preliminary data.

    BLAKE EDWARDS-- The Pink Panther creator and spouse of Julie Andrews who fell ill with CFS while filming the Ted Danson vehicle "A Fine Mess" in 1983. Seven years later, after failing to recover, Edwards tried without success to rally the Hollywood community to provide financial support to independent researchers in the field.

    JON KAPLAN-- Kaplan and Gary Holmes were the CDC representatives sent to Incline Village to investigate the epidemic, yet Kaplan was never able to cross the boundary of frank disbelief. He played a pivotal role in persuading his superiors at the federal agency that the outbreak was bogus--a "collusion between patients and doctors"--and unworthy of further pursuit, an achievement that set the tone for the federal response to the disease and its victims for the next decade.

    SEYMOUR GRUFFERMAN-- A respected cancer epidemiologist whose career was tarnished when he began studying the relationship between CFS and cancer and the degree of contagion in the disease. In spite of his efforts, he has never been afforded public funds to pursue his preliminary findings of an increased cancer risk and infectiousness in the disease. He has called the government's posture on CFS "institutional sabotage in the broadest sense of the world."
  3. quanked

    quanked Member

    fightforacure--If I was good at playing these kinds of games and puzzles I would not even know about this board for cfids.

    Thus, I have to wonder why you would post 2 such lengthy pieces that (I stopped reading your second post 1/2 to 3/4 through as I began to wonder what the point was) have a reader looking for something that is not there.

    In all I read (and I do have brain fog, memory problems and so forth) I read nothing of "...the idea of how they say that people can get this virus." I just got a copy a couple of days ago of "Osler'Web" and believe me the size alone is daunting to me so I doubt that I am going to be reading up on all the research articles. My eyes cross and brain cringes at reading research articles with medical jargon. How I ever did it in the past I do not know.

    My understanding is that nobody knows how people get this virus (which virus, ebv?). Xmrv is a retrovirus which i understand is more serious than a virus and only a couple have been found to reside in humans. Maybe it was 3. If the article above or below tell us how xmrv is transmitted then I missed it. If someone knows then research should be focused somewhere else.

    I read posts in hope of learning something new or in hope of finding support. I just feel frustrated right now. . Then again, perhaps all I read went over my head.

  4. skeptik2

    skeptik2 Member

    I sure hope you got Hillary's permission to post all this; all her
    material is copyrighted, and she does not like her info put out
    anywhere without her permission.

    Are you writing a book? Your posts seem to suggest so; you
    gather all the info you can from patients on different subjects...
    are you going to put out a book of your own?


  5. fight4acure

    fight4acure Member

    Yes, you got it! Thank you!

    I just don't want the scientists to get it wrong. Might we be contagious in ways other than bodily fluids as Dr. Oz has mentioned on his show? I've often wondered if I was contagious with people around me getting ill and it seemed as if they were describing my symptoms a lot, without them knowing what I am ill with.

    Fight2Educate! :)
  6. fight4acure

    fight4acure Member

    A contagious disease is a subset category of infectious diseases (or communicable diseases), which are easily transmitted by physical contact (hence the name-origin) with the person suffering the disease, or by their secretions or objects touched by them.[1]

    The non-contagious category of infectious/communicable diseases usually require a special mode of transmission between hosts. These include need for intermediate vector species (such as a mosquito for yellow fever), direct blood contact (such as transfusion or needle-sharing), or sexual contact (examples are AIDS and hepatitis B).

    The boundary between contagious and non-contagious infectious diseases is not perfectly drawn, as illustrated classically by tuberculosis, which is clearly transmissible from person to person, but was not classically considered a contagious disease. In the present day, most sexually transmitted diseases are considered contagious, but only some of them are subject to medical isolation.

    I do not believe that people who were victims of the outbreak of the XMRV virus were having direct blood contact and/or bodily fluid contact, at least not all of them, so it hardly makes sense to call XMRV a non-contagious disease. It's like calling Tuberculosis non-contagious.

    Plus, can we get it by our pet cats? The feline MRV is quite similar to the human MRV. If a cat bites us, can we get it from them? How did we get this in the first place? Lots of questions to ponder...

    And why do they treat CFS patients overseas with Ampligen, but the FDA hasn't approved the treatment here in the US?

    By the way, I only post public information. I did not violate anyone. I heard it is a great book and am proud of her for having the guts to write it! I am not a writer of books. I prefer to write songs and poetry. I do not collect information on here. I am hurt by the accusations, but I understand that people can misunderstand people, as I've learned with this illness of how often doctors have misunderstood me. I've grown patient in dealing with people who have misunderstandings. Sometimes that is the only way we learn. I wish I could write a book, but I don't have the energy nor will nor desire to do so at this time. Maybe 20 years from now if I make it. I'm sorry to see a wrong impression was made of me, but it's happened before so I'm not surprised.

    Fight2Educate! :)
  7. ladybugmandy

    ladybugmandy Member

    i think you can get ampligen oversees but you have to find a doctor to prescribe it, apply for emergency release authorization, and pay for the drug. it's not cheap.

    i have to wonder whether the XMRV discovery has led to the postponement of ampligen approval. most thought it would expedite things but perhaps the FDA feels that antiretrovirals could now be used at a lesser cost, since ampligen is IV?....just guessing here...

    you cannot get XMRV from your cat, only other humans. the virus that affects humans is a little genetically different than the one that affects cats or mice.

    i think it will eventually be reported that you can get XMRV by casual contact, (perhaps while a person is acutely ill with a herpes virus or something?). they just don't want to encite panic right now.
  8. fight4acure

    fight4acure Member

    Not cheap, yep, there goes my luck...

    I read online something about there being a controversy about the drug company who made it and how it falsified the research studies, thus the FDA won't okay it. But that still baffles me why the FDA won't approve it, because the company could have done more tests, or research studies to prove it is a good medicine. Now I wonder how long this medicine has been out? Did it come out as a drug to treat CFS with the news in OCT? I see it has been used for HIV but did it come out for CFS when the news about CFS was that there is this XMRV virus? Because I haven't been keeping tract of things all years, I need an update. (Whew! One too many abbreviations, lol.)

    Also, let me find the site that explained XMRV, to show what I mean by it being very close to the virus that felines have.

    Here is one: but it shows how mice and humans get XMRV, I'll look for the one I found last time and post it below when I find it.

    What is XMRV?
    XMRV, or xenotropic murine leukemia virus-related virus, is a type of virus called a retrovirus that was first identified in 2006 in the prostate tumors of men. It is closely related to murine leukemia viruses, which causes a wide variety of cancers and immunological and neurological diseases in mice. Although it is not known how XMRV is transmitted, preliminary studies suggest this could occur via blood and other bodily fluids. It is known that XMRV is not spread in the air like influenza virus. There is currently no evidence to suggest that XMRV is causing a spreading epidemic. The origins of XMRV are unknown, but researchers suspect that it may have arisen by cross-species transmission to humans from mice or possibly from another animal species.

    What is a retrovirus?
    A retrovirus is a type of virus that has RNA instead of DNA as its genetic material. RNA has several roles, but it primarily is the molecule that translates and transfers material from DNA. Inside the host cell, retroviral RNA is reverse transcribed to produce viral DNA that inserts into the host's chromosome, allowing many copies of the virus to be made. When retroviruses infect germ cells (sperm or egg), endogenous viruses, can develop. The integrated viral DNA, or provirus, is passed from parent to offspring. There is no evidence suggesting that XMRV can do this in humans.

    Retroviruses are found in a wide range of mammals, and may contribute to the development of cancers, such as leukemia or lymphoma, and neurological diseases. The first of two human retroviruses identified, HTLV-1 has been found to cause adult T cell leukemia and HTLV-II is not associated with any disease. Human immunodeficiency virus (HIV), which causes AIDS, is a different type of retrovirus.

    What is the link between XMRV and cancer or other diseases?
    Whether XMRV plays a role in cancer and other diseases remains unclear. Research shows a possible association, but currently, there is no evidence that the virus causes a disease.

    The virus was first discovered in tumors from men with prostate cancer and was mostly found in combination with a specific genetic defect in a gene called RNASEL, which, when unmutated, helps defend the body against viruses. Recent research has suggested that chronic viral infection with XMRV might be associated in some way with prostate cancer.

    A 2009 study of more than 300 prostate tissue samples collected from American men found that XMRV was present in 27 percent of the tumor samples and six percent of the noncancerous prostate samples in men who had not been diagnosed with prostate cancer. The virus was more commonly found in men with aggressive tumors. But in this study, XMRV infection was not associated with the RNASEL defect, which may indicate that all individuals may be at risk. In contrast, a research group in Germany found no association between XMRV and prostate tumors. They analyzed 589 prostate tumor samples for the presence of the virus and tested blood samples from 146 of the prostate cancer patients for antibodies to the virus. Another German study and an Irish study found no evidence of a link between XMRV and prostate cancer. These differences in findings highlight the need for more research on this virus. The variation in results could be because of methodological differences or the studies were testing for different strains of XMRV. Another reason is that the virus may be more prevalent in certain geographical regions.

    The virus has also been identified in patients with chronic fatigue syndrome. A study looking at clusters of cases in Nevada, Florida, and South Carolina found that 67 percent of 101 chronic fatigue syndrome patients were infected with XMRV, but less than four percent of 218 healthy people were infected. The virus was detected in white blood cells while viral particles were detected in plasma (the non-cellular portion of the blood).

    Taken together, these findings do not indicate that XMRV causes cancer or chronic fatigue syndrome. If the virus is found to be the causative agent for any human disease, these findings could lead to better ways to screen for the disease, inform treatment strategies, and may eventually lead to strategies to prevent the occurrence of the disease, but much research will need to be done to establish causation before any of these tests or strategies would be undertaken.

    What is the prevalence XMRV infection in the general population?
    The number of healthy people infected with XMRV, and what the distribution of infection is within the U.S. and worldwide, is unknown. The virus has been detected in about four percent of individuals from the same geographical region as infected patients with chronic fatigue syndrome. An analysis of more than 300 prostate tissue samples found that the virus was present in six percent of noncancerous prostates. These studies suggest that XMRV infection could be widespread, but there is no evidence for a new, increasing, or spreading XMRV infection. The NCI is developing molecular tools to determine the incidence of XMRV in the general population and is involved in coordinating a global effort to study the prevalence and distribution of XMRV.

    How is XMRV transmitted?
    The route(s) by which XMRV is transmitted from person to person are unknown. Some studies suggest that the virus may be transmitted though semen or saliva, but at this point, there is no direct evidence to support this suggestion. Given that the virus has been detected in white blood cells, blood-borne transmission is a possibility. More research is needed before guidelines can be established, but it might be prudent for potentially infected individuals to refrain from donating blood. It also is important to note that retroviruses, like XMRV, are not airborne viruses.

    What is the current understanding of XMRV?
    There is still much to be learned about XMRV. The virus is associated with prostate cancer and chronic fatigue syndrome, but whether it is involved in causing these diseases has not been proven. Laboratory and population studies will help determine the role that XMRV plays in these diseases. The virus could be merely a passenger virus that prefers to grow in rapidly dividing cells, such as prostate cancer cells. Individuals with prostate cancer or chronic fatigue syndrome might be more susceptible to XMRV infection because of changes in their immune system. XMRV could be only one of many factors, genetic or environmental, that are involved in the progression to disease.

    Many other questions about XMRV need to be addressed. Whether the virus plays a role in other diseases and how the virus is transmitted are unclear. The NCI is involved in coordinating a global effort to study the extent of infection in the general population. Population studies, using well-validated blood and genetic tests, will help provide an understanding of the prevalence, distribution, origin, and mode of transmission of XMRV.

    How is NCI addressing concerns about XMRV?
    The NCI is working to develop diagnostic tools so that the prevalence of XMRV in the general public can be determined and its' association with disease can be examined. The origin and mode of XMRV transmission in human populations are key public health issues that NCI scientists are addressing.

    Following a recent series of NCI-sponsored meetings, priorities were established to address research issues. The NCI is mobilizing its resources in cancer biology, diagnostic assay development, drug development, epidemiology (population studies), immunology, and retrovirology to address these issues as rapidly as possible, including:

    Developing suitable, well-validated tests to detect XMRV infection and using these to search for evidence of infection in forward-looking as well as historical population studies to understand the prevalence, distribution, relationship to disease (CFS, prostate cancer, and potentially other cancers), and mode of transmission of XMRV.
    Developing suitable models for infection and disease.
    Performing patient-based studies to probe the causality and mechanism of disease induction by the virus.
    Studies to address these issues are well under way in the NCI and in many extramural laboratories.


    Coffin JM and Stoye JP. A New Virus for Old Diseases? Science 2009; 326:530-531.

    Hohn O, Krause H, Barbarotto P, Niederstadt L, Beimforde N, Denner J, Miller K, Kurth R, and Bannert N. Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology 2009. 6:92.

    Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, and Mikovits JA. Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Science 2009. 326: 585-589.

    Schlaberga R, Choeb DJ, Browna KR, Thakerb HM, and Singh IR. XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors. PNAS 2009. 106: 16351-16356.

    Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, Silverman RH, DeRisi JL. Identification of a Novel Gammaretrovirus in Prostate Tumors of Patients Homozygous for R462Q RNASEL Variant. PLoS Pathogen 2006 2:211-225.

    Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T: Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer. J Clin Virol 2008. 43:277-283.

    D'Arcy F, R. Foley, A. Perry, L. Marignol, M. Lawler, E. Gaffney, R. Watson, J. Fitzpatrick, T. Lynch: No evidence of XMRV in Irish prostate cancer patients with the R462Q mutation. European Urology Supplements 2008. 7:271.

    [This Message was Edited on 12/24/2009]
  9. fight4acure

    fight4acure Member

    I found it!

    Look at the purple box at the bottom of the screen on the above website...

    [hide]v • d • eVirus: Retroviruses

    SsRNA-RT virus/
    retroviridae Alpharetrovirus Avian Sarcoma Leukosis Virus · Rous sarcoma virus

    Betaretrovirus Mouse mammary tumor virus

    ---------------------Gammaretrovirus Murine leukemia virus · Abelson murine leukemia virus · Feline leukemia virus · Xenotropic murine leukemia virus-related virus -----------------------------------------

    Deltaretrovirus Human T-lymphotropic virus (HTLV-1, HTLV-2) · Bovine leukemia virus

    Epsilonretrovirus Walleye epidermal hyperplasia virus

    Lentivirus HIV · SIV · FIV · Puma lentivirus · EIA · Bovine immunodeficiency virus · Caprine arthritis encephalitis virus · Visna/maedi virus

    Spumavirus SFV · HFV

    Other Metaviridae · Pseudoviridae

    DsDNA-RT virus Hepadnaviridae (Hepatitis B virus)

    Other Endogenous retrovirus

    [This Message was Edited on 12/24/2009]
  10. fight4acure

    fight4acure Member

    I just do not buy into the "sexually transmitted" part. It is an insult to the communities who come down with this illness during the outbreaks noticed in the past. While it might be transmitted sexually between partners, I doubt the whole group was going around doing you know what. That is such an insult to those who caught it and did not have sexual contacts. I do not know why the research scientists are being so stupid not to realize this. Maybe we can grow them a brain. While I do admire the fact that they finally figured out something tangible with this illness, I do not like the fact that they don't bother to look at the logic of their findings of how it can be transferred.

    Plus, I have seen people get quite ill after hanging out with me. One got severe Mono for a few months after spending time with me, as she had to use my computer and we talked about guys we were seeing. I tested negative for it so it baffled me. I was thinking for a moment that maybe I had coughed on her or something.

    Another got really ill and the doctor had no idea what she had, but she was so ill and told me all of her symptoms and how mysterious they were and how the docs couldn't figure it out. My jaw dropped as she continued to talk, it sounded like she knew my medical history and was repeating it to me. I volunteered with her at a non-profit agency.

    Then this one girl came down with something shortly after a conversation with me. Lymphoma. She has no idea how she became a risk, but I had my wonders, as her symptoms were much like mine, before she got the lymphoma diagnosis and had to get chemo.

    Then this friend of mine who I worked closely with but had no contact with, other casual hugs, he ended up having something wrong with him after hanging out with me. Luekemia was the diagnosis. His white blood cells have never been right since. He's tried the therapies, radiation, chemo, but his white blood cells do not fully recover. So far he's had I think 4 attempts at chemo. He's really ill and I feel so sad for him. He continues to work because he cannot afford to go on disability, as it wouldn't pay his bills, and his wife earns too much I think. She takes him to good hospitals, but nothing seems to be helping him.

    These are just a few examples. Do I think I'm contagious? Yes. I've seen about a dozen people really close to me come down with diseases that mimic my symptoms of FMS/CFS/& Lyme disease, and it scares me. People I'm not sharing bodily fluids with. Of course I would be told that I'm just a hypo for thinking that, but I don't care. They got this all wrong! People in these outbreaks were not having some sex with each other or sharing needles, doing drugs. It is an insult to them to say that this can only be transferred through blood or sex.

    That's the point I wanted to make. Thanks for listening to me ramble. I am going to take a break now from all of this, as I get quite upset at the docs/&/orResearchers who think they know everything unless it is proven otherwise. They should look at the logic of the outbreaks. This is a contagious disease, but there's a lot of covering their behinds going on.

    My friend had CFS before I knew what CFS was. I hung out with her a lot at the college, and a few times at her house. One night she had a party, I forget what it was celebrating, as it has been over 12 years ago. She wanted me to try a drink. I sipped on the bottle and did not like the drink, but there may have been a saliva transfer at that point, or maybe it was just hanging out with her. I do not know how long it was from that time until the time I became deathly ill with some bacterial infection, they assumed was Lyme Disease, Fibromyalgia, and a few years later I was diagnosed with CFS. I now have the same illness that my friend has. I haven't been in contact with her for many years, because (sad to say) I forgot her last name and believe she moved shortly after she got married. I wanted to tell her that I now have the same thing she has.

    There are many other incidences of people close to me becoming ill with some bad illness, and/or coming down with some viral infection, that verify enough to me to believe I have something contagious. I wish the doctor on House would take on this illness.

    I'd like to push for more logical research to be done, seeing how this is contagious, as I believe it is.


    P.S. Thanks for the responses![This Message was Edited on 12/24/2009]
  11. fight4acure

    fight4acure Member

    just in case someone else wants to read this

    Fight2Educate!:)[This Message was Edited on 12/25/2009]

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