"In this important essay, the NCF examines and reports on keynote discrepancies between medical observations made during the time period of the Lake Tahoe outbreak (1984 - 1986) and what was published in the Annals of Internal Medicine journal article (1992) on the Tahoe outbreak itself. One discrepancy is further highlighted and exacerbated by recently published research (2006) that not only confirms the initial Tahoe observations but expands on them as well. The NCF questions the rationale as to why the early medical test results failed to make it to the Annals article and ultimately to the general patient population. The NCF's research is discussed within the context of these scientific observations."
"Not only did Cheney's patients suffer from a B-cell deficiency but several of these patients produced abnormally low levels of several classes of immunoglobulins as well. Johnson stated, "One of the most striking immunological aberrations Wormsley observed, however, was abnormal ratios of T-cell subsets. T-cells are a major category of immune system cell; they regulate production of disease-fighting antibodies. Two primary T-cell subsets are "helper and suppressor" T-cells, which boost and suppress antibody production, respectively.
In AIDS the normal ratio tends to be dramatically skewed in favor of suppressors. Since this finding is virtually diagnostic of AIDS, Cheney and Peterson were curious to know the T-cell subset profile in the Tahoe malady....Wormsley's result showed that four of five Tahoe patients did have abnormal helper-suppressor ratios. But, unlike the ratios in AIDS sufferers, they were low in the numbers of suppressor cells. Instead of one-to-two or one-to-three, which are typical of healthy people, the Incline patients had helper-suppressor ratios of five-to-one, ten-to-one, and higher. It was the mirror image of AIDS."
[Cognitive Behavioral Therapy] "is based upon the thinking that one's illness is due to the wrong way of viewing their lives or of past bad experiences. One survey done by the 25% ME Group found CBT was the treatment that was the most unhelpful one offered with only GET (Graded Exercise Therapy) getting worse results. These are the two treatments suggested by our own Centers of Disease Control and Prevention (CDC). Both are unproven and GET has been proven to actually be harmful to pateints thatresult in relapses that have been found to last weeks, months, or even years."
"The CDC, from the year 2000 to 2003, has had committee meetings to change the definition of CFS in order to make it a mere psychological fatiguing illness and to bypass the much more stringent 1994 research criteria that physicians have relied upon. They published a paper in 2005* that watered down "CFS" and eliminated any thought of it actually being M.E. "
"The first carefully documented epidemic noted by a medical journal occured in Los Angeles in 1934. Doctors, nurses and patients got sick during a polio outbreak. Yet, they didn't have polio. They had muscle weakness (no, it wasn't dubbed "fatigue" then), invountary muscle contractions, muscle twitching, myoclonic problems, sensory abnormalities and parathesias, vasomoter changes and some had muscle inflammation. It was called benign poliomyelitis. It is now called CFIDS (chronic fatigue immune dysfunction syndrome) or CFS (chronic fatigue syndrome) or ME (myalgic encephalomyelitis) or a few other names. There are patients alive today who still suffer from this original outbreak. They have been diagnosed, more recently, with ME. Although the medical journal reported on the 200 that got sick at the Los Angelos County Gereral Hospital, many more in that area got sick that same summer. A U.S. Health Bulletin described the chronic polio-like illness as "atypical polio." The same year, an epidemic was taking place in England at the Royal Free Hospital. Those who are still living have been rediagnosed with ME."
[Although only 240 people have been infected with bird flu and all of them worked with birds] "CDC has a lot to say about an impending "bird flu epidemic" that they want to try to stave off while they ignore an epidemic that is already among us and has been for years."
Yes, what about the millions of people who have been suffering with CFS for the past quarter century? I've had it for 20 years. But because it is not a virus that is commonly tested for, I've gotten diagnoses of anxiety, laziness, depression, hating my husband, hating my job, and defrauding the disability system.
NCF recommends the following blood tests: Immune/Lymphocyte profile via flow cytometry - Absolute and percentage for each of the following cell markers:
CD3 - Total Lymphocytes
CD4 - Helper T-cells
CD8 - Cytotoxic/Suppressor T-cells
CD19 - Mature B-cells
These tests have not been done on me, probably because doctors who are convinced I'm just a depressed divorcee or anxiety-ridden woman or housewife wannabe are afraid that they'll see objective proof that CFS is real.
While those tests were not done, I did have, as part of the application process for a fibromyalgia clinical trial, a C Reactive Protein test, which tests for infection or inflammation. Normal is 5. My first test was a 28. The result was so "off the charts" [doctor's words] that he was convinced it had to be lab error. I went back in, had the test re-done, and the nurse used the words "sky high" -- the re-test was even higher, 30 -- 6x normal. That kicked me out of the clinical trial, but gave me the objective evidence I needed for my disability application.
Unfortunately, the judge, who also espouses the theory that there's nothing physically wrong with CFS patients, simply ignored the test results. There's not a word in his decision about this piece of objective evidence that could not be discounted as "lies" and fakery. Clearly, he hopes that the Court of Appeal will not look through every page of the 6" file to find the two pages that prove that this is objectively a physical illness and not some scheme to Get Rich Quick on the pittance that Disability pays.
I'd get rich a helluva lot quicker if I could go back to work. This morning, I saw my old job title advertised at $56,000 -- more than four times what I'd be getting from Disability. Plus, that job includes medical/dental and retirement plan contributions ... something I won't get with Disability. Assuming I ever get Disability, since it's clear that this judge will never consider any evidence of physical illness. Any evidence -- whether my testimony, friends' testimony, or doctors' reports -- that says there's something physically wrong with me that is visible to others is simply dismissed as "not credible". The blood test results will never see the light of day if he can help it. Putting thousands of dollars of immune function testing and brain scans on my credit card probably wouldn't help me, either -- more than likely, he'll stubbornly refuse to acknowledge that evidence exists, too.
Just like CDC, to this day, slips into their press conferences that the real problem in CFS is not the virus that Elaine DeFreitas identified 20 years ago, but things like "stress" and "child abuse". The real truth -- the truth that's been known to doctors who actually treat the patients -- has to be swept away in order to make believable the notion that CFS can be cured with anti-depressants and talk therapy, and is nothing more than an emotional basket case who cannot deal with real life and takes to her bed.
The real truth is that most CFS patients, including this one, drag themselves to work while getting ever sicker, and take to their beds only when it is physically impossible for them to stand up long enough to get dressed. The real truth is that the patients involved in the CFS epidemics report a virus or other infectious onset, not psychological problems. The real truth is that I got a virus with a high fever BEFORE I got married, so it's not something that has to do with having a husband, and that I had a severe relapse WHILE I was married, so it's not something that has to do with being divorced. It may be more convenient to blame my marital status, but it's not accurate. Nor is much of the information being circulated about CFS accurate. Research shows that anti-depressants are completely useless; research shows that the only treatment worse than psychotherapy is exercise; and these are the treatments that are most often recommended by doctors, because the media keep repeating the inaccurate theories and the evidence of objective physical abnormalities rarely sees the light of day in the mainstream media. (e.g., Dr. Gow's finding of blood abnormalities rated a sentence in CNN's daytime crawl, but disappeared from the crawl within a couple hours, and was never reported orally on CNN, nor on their website, nor, to the best of my knowledge, in any other TV station or US newspaper)
The truth is covered up by those with ulterior motives. It recently came out that CDC's head researcher into CFS isn't a virologist, but a nationally-recognized expert on stress. As the saying goes, "if the only tool you have is a hammer, every problem looks like a nail". He knows nothing about virology, but he knows how to attribute things to stress, so he talks about what he knows best.
Perhaps the problem can be solved by putting someone else in charge -- a virologist. Someone who understands infectious diseases. Someone who specializes in MEDICINE and not psychobabble.
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