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NEW FACTS ON CFS
Index There has
been much controversey over exercise and other topics. You will also notice
many other conflicting information. In my quest to keep up to date material
on CFS - I have found the latest from the best sources on the Web. Does exercise lessen symptoms or make them worse? Exercise,
as well as other physically and mentally challenging activities, can exacerbate
fatigue and other symptoms associated with CFS. Patients report that the
effects of exercise may not be felt until 1 to 2 days after the activity.
Studies are under way to determine the cause of and to characterize this
phenomenon. It is clear, however, that lack of exercise definitely leads
to deconditioning. Therefore, a regular regimen of mild to moderate exercise,
determined by your own individual tolerance, is generally recommended.
This is one of the facts found at the Chronic A: There are
no published data indicating that CFS is communicable through either casual
or intimate contact. Studies of groups of CFS patients and their contacts
have revealed no evidence of person-to-person transmission of the illness.
Furthermore, reports that pets are involved in the transmission of CFS,
or that they can contract the disorder, are unsubstantiated. (taken from
the CFS Home Page). Centers for Disease Control (CDC) Today, more evidence supporting CFIDS contagion--in the form of over 50 peer-reviewed articles in the medical literature and targeted viruses--has been gathered. This evidence was discovered and properly documented by our top national scientific researchers. In fact, in 1995, the CDC listed CFIDS as a "Number 1 Priority Infectious Disease." This classification has not changed. Here is new
evidence that does show that CFS may well be indeed contagious. One organization's
research (CFS Home Page) says it isn't contagious and yet another research
states Don't give blood!! WHY?? Abnormalities of the immune system Q: Do CFS patients have lower than normal numbers of natural killer cells or natural killer cells with impaired function? A: Some investigators have reported lower numbers of natural killer cells or lower levels of natural killer cell activity in CFS patients than in controls. Others have been unable to observe any natural killer cell abnormalities among CFS patients. No study of natural killer cells in CFS patients has ever defined an abnormality that consistently identifies the patients. As with other experimental assays, measured levels of natural killer activity varied greatly among patients and controls, and individual test results overlapped considerably; thus, no clearly abnormal values separated all (or most) cases from all (or most) controls. Q: Are T-cell activation markers present on a higher number of immune cells in CFS patients? A: One study showed that the CD8 Tcell subpopulation contained an increased number of cells expressing the activation markers CD38 and HLADR in a subset of CFS patients who were very ill. This finding was true for a large proportion of CFS patients (90%), but only a small fraction of healthy controls (10%). However, similar shifts in the expression of activation markers have been observed for various acute viral infections and would be expected of any active infection. The usefulness of activation markers in diagnosing CFS remains to be established. Q: Could evidence of elevated levels of serum cytokines indicate CFS? A: One of the more intriguing theories about the cause of CFS is that one of a number of possible "triggering events" results in a chronic activation of the immune system in these patients. If this theory is correct, one or more serum cytokine levels of CFS patients may be more elevated than those of healthy controls. Such results have been reported anecdotally for interleukin1, for example, but no characteristic pattern of serum cytokines has been established. Q: If I have allergies, am I more prone to get CFS? A: Several
studies have demonstrated that some, but by no means all, CFS patients
have a history of allergies. Allergy could be one predisposing factor for
CFS, but it cannot be the only one, since not all CFS patients have allergies The following article was taken from the CDC Subject: CDC -- THOSE WITH CFIDS: "PRUDENT TO REFRAIN FROM DONATING BLOOD" Status:
The two attached letter copies point indisputably--as far back as early 1992--towards the government's determination that the American blood supply, via blood transfusions, might prove to be one of the main transmission routes of Chronic Fatigue/Immune Dysfunction Syndrome (CFIDS). Both letters--one composed by William C. Reeves, M. D., at the Centers for Disease Control (CDC) and the other, by George W. Rutherford, then head of Infectious Diseases for the California Department of Health--were replies to my inquiry (which documents some of my immunilogical AIDS-like test results, while I was under the care of Daniel L. Peterson, M. D., of Incline Village, Nevada) about the safety of the blood supply, were I, a well-documented CFIDS patient, to donate blood. These communiques were sent on 6/13/92 to about a dozen national news agencies. Shortly thereafter, on one day alone, the CDC received over 300 media calls regarding CFIDS contagion. Reeves, unfortunately--and questionably--was not on hand that day to address the queries of the press. Despite so, the contents of the letters were publicly aired on many southern California TV stations and in publications, one being an article by Jean Griffin of The Chicago Tribune. However, on the 3/27/96 edition of Prime Time Live, Reeves--who along with Stephen Straus, head of CFIDS research at the National Institutes of Health (NIH), refused to be interviewed--stated by telephone that CFS "is not caused by a virus"; that there are/were "NO cluster outbreaks," labeling the one at Lake Tahoe as "hysteria"; and that CFS "does NOT affect the immune system." It is intersting to note that also during Prime Time Live, Phillip Lee, Assistant Secretary of Health, in effect, disputed Reeves' statements, pointing out he believes there "are cluster [CFIDS] breakouts" and that he guesses the disease "is caused by a retrovirus of some type of virus." Even though I'd long previously to 6/13/92 mailed letter copies to the CFIDS Association in Charlotte, NC, not one iota of their contents were published in the association's quarterly journal The CFIDS Chronicle. In fact, the day the news hit, Kimberly Kenney, current treasurer of the organization, telephoned. "He [Reeves] really stuck his neck out on this one," she said, further stating it would do him no justice to continue sending out further letter copies--that it would prove too embarrassing to the CDC. I now know that this was ONE instance in which the government was actually doing its job by telling the truth. My point here is that, in many's opinions, the CFIDS Association is now--for whatever possible reason--trying, along with the government, to squelch the reality of CFIDS. This organization, I would hope, would be approached cautiously and with this knowledge. Today, more evidence supporting CFIDS contagion--in the form of over 50 peer-reviewed articles in the medical literature and targeted viruses--has been gathered. This evidence was discovered and properly documented by our top national scientific researchers. In fact, in 1995, the CDC listed CFIDS as a "Number 1 Priority Infectious Disease." This classification has not changed. The CDC may attempt to discredit these letter contents, claiming them "{bogus." (I do have the originals and can prove their hertiage.) Or the agency may try to wiggle out, purporting something like, "In 1992, we thought the possibility that CFS could be contagious might have existed. Since then, however, we've found no evidence to prove this and [blah, blah, blah], so, therefore, this issue has been resolved." The real situation is way to the contrary. In 1987, I had two blood transfusions while in surgery for a shattered hip and femur. The next day I came down with a serious bodily infection which could not be traced at Sutter General Hospital in Sacramento; instead of being hospitalized for the estimated three days, I spent 14 recuperating. When I left, I still had a temperature of 99 degrees, a temperature that still continues to haunt me. I've yet to recover from CFIDS and because I've been sick with this disease for almost nine years, my chances of recovery are nil. Easily and inexpensively, the blood supply could be checked to help prevent further CFIDS cases. These tests, while not totally tell-tale, would certainly be a high indication of CFIDS or some other viral illness, and thus, any blood showing abnormal antibody titer counts for Epstein-Barr virus, Cytomgelavirus, Human Herpes virus VI, and/or the Coxsackie strains, could simply be pulled from the blood supply. Why did the CDC tell me, a lone individual suffering from CFIDS, one thing, while telling the public completely the opposite? To avoid panic? Informing the public, "If you have CFIDS or think you MAY have CFIDS, do not donate blood until the issue of possible blood contagion has been resolved," would serve only to dispel panic. Otherwise, we wonder, "What is so tremendously secretive that the CDC is trying so desperately to hide?" The NIH and the CDC have successfully made CFIDS a political issue, rather than what it is: A bona fide and perhaps very infectious disease. Please, please, try to help prevent millions more from getting this disease, which is quite literally, a "living hell." (From a press release sent to press agencies on 5/5/96.) Please direct your Questions
to: Center for
Disease Control or Email: your Congressional Representative and/or contact any of the Major News Agencies LEGISLATIVE BRANCH INTERNET SITES Check out these other related sites This page
was the work of Joan Irvine - sadly no longer with us Joan Luther Irvine -- 1947-1996 -- Rest in Peace The following information was obtained from the CFS Home Page How many people in the United States have CFS? Carefully designed studies conducted by independent researchers using restrictive criteria have yielded estimates that at least 200,000 to 500,000 adults in the U.S. have CFIDS. CDC data confirm these estimates. Prevalence studies of the illness among children and teenagers have not been done. Many cases of CFIDS among youth and adults remain undiagnosed or misdiagnosed. These conservative minimum estimates support the fact that CFIDS is one of the most prevalent chronic illnesses of our time. For example, it is at least twice as common as multiple sclerosis.On the basis of results from the first several years of data collected from its physician referral-based surveillance study, CDC estimated the minimum prevalence rate of CFS in the United States at 410 cases per 100,000 adults 18 years of age or older (adjusted for age, sex, and race). Other investigators have reported substantially higher rates. CDC has recently completed the first phase of a community-based study to determine more accurately the prevalence rate of CFS. Although some media reports have indicated that more than 5 million persons in the United States have CFS, these estimates are not supported by scientific studies. In the United States, approximately 80% of diagnosed cases of CFS are in women, most of whom are white. Most patients are 25 to 45 years old. However, CFS has been diagnosed in a wide range of age groups, including adolescents, and persons of different races. Diagnosis of CFS among some groups may reflect differences in culture and factors such as access to medical care. Carefully designed surveillance studies of CFS must be performed before a clear picture of its distribution in the population emerges. In its current studies, CDC has taken steps to address cultural differences and other issues which may have led to underreporting of CFS in non-white populations.
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