GOVERNMENT AGREES CFS IS NOT CFIDS/ME
By Robert Huntington
Many issues of The National Forum have explained why CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndroem/Myalgic Enchepalomyelitis) is not CFS. The research being reported upon by our Centers for Disease Control and Prevention (CDC) have used a newer criteria, the "empirical approach"(1) to select the research subjects for their studies and all those with just one neurological symptom are excluded. This new approach waters down the already watered down Fukuda Definiton of 1994(2) that excluded any neurological symptoms included in the original Holmes criteria of 1988. Though many researchers argued that the newer Fukuda guidelines do not eliminate the possible inclusion of chronic fatigue, a somatoform illness, the CDC felt it a necessity to further muddy the waters. The result has been that they are no longer talking about CFIDS/ME.
Were they ever talking about CFIDS/ME? The National Institute of Allergy and Infectious Diseases (NIAID), part of our National Institutes of Health (NIH), put out a booklet in September of 1996 as a public health service of the U.S. Department of Health and Human Services (DHHS). The title was "Chronic Fatigue Syndrome-Information for Physicians". They began by letting the physician know that the 1994 criteria is a "revised, more inclusive criteria" but they fail to mention it was more inclusive to let those with the mere symptom of chronic fatigue be included. On the second page of this booklet, they state: "Symptom complexes similar to CFS also are known as epidemic neuromyasthenia, myalgic encephalomyelitis, postviral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome in different parts of the world. No immune dysfunction specific to CFS has been found, however, and there is no evidence linking encephalmyelitis to the pathology of the illness."
"Similar" is not close enough. Similar means both the NIH and CDC (as well as all agencies of our federal government) are not differentiating between a disease with documentable neurological symptoms and replicated and scientically proven immune abnormalities that is CFIDS/ME. In fact, they admit that "CFS and CFS-like syndromes have been reported widely, including in Europe, Australia, New Zealand, Canada, Iceland, Russia, and South Africa." In fact, ME (myalgic encephalomyelitis) has been documented in each of those countries listed. When they address "immune features", they say that the reports are inconsistent and that "all of these finding point to general differences between patient populations and control groups" and that "there is no published evidence that CFS is associated with opportunistic infections or risk for the development of malignancies." Did they actually look? Did they actually report truthfully if they did? Is our funding financing work already done and work that's been hidden by our own government? Is the NCF dedicated to finding out a truth that's already been found by others who have vowed not to be truthful?
Addressing neurological problems that they term "neuropsychologic features", they say the cognitive dysfunction is "unresolved at this time" but they've never tried to resolve it with brain imaging or any other technique that they've made public. Others have had no problem documenting and replicating the cognitive problems extensively in peer-reviewed medical journals. They do mention, since the Fukuda definition was used to diagnose many CFIDS/ME patients because there was a lack of any other way to diagnose them in this country, that "some patients report other neurological symptoms" but they mention only "parathesias, disquilibrium, and visual blurring" when our own symptom list, gleaned from Paul R. Cheney, M.D., Ph.D., Jay A. Goldstein, M.D., Anthony L. Komaroff, M.D., and Daniel Peterson, M.D., list 23 and that is only counting those that these specialists have found to be the most common.
Strangely enough, they state "In other illnesses like SLE and MS, debiltating chronic fatigue can be more prominent than rheumatologic or neurological symptoms, but the presence of objective physical findings, laboratory abnormalities, and illness progression point to the correct diagnosis." There is no test for either of those "illnesses" (note that they aren't, however, called "syndromes") and the exact same abnormalities found in both are found in CFIDS/ME including the all the different brain scans found and published in medical journals. At least one, by Harvard's MS (multiple sclerosis) expert Charles M. Poser, M.D., told how to differentiate between multiple sclerosis (MS) and what he termed "chronic fatigue postviral syndrome" and Dr. Poser pointed out the differentiation was where the lesions are found in MS and where they typically occur in CFIDS/ME on these brain scans as well as in other illnesses such as AIDS and sarcoidosis and SLE (systemic lupus erythematosus). Is the NIH unaware of this well-known article? Are they unaware of all the medical literature providing hard science which is not a theory but is replicable black and white science with no greys? It is common to have a CFIDS/ME patient misdiagnosed with both MS and SLE because of both similar symptomology as well as similar test abnormalities but I would imagine the NIH as well as the CDC know this all too well.
This NIH booklet for physicians carefully notes similar conditions that can explain the symptom of "chronic fatigue" and list hypothyroidism, sleep apnea (though many CFIDS/ME patients have these as well), narcolepsy (though patients often are postive to one of the two tests for narcolepsy), unresolved hepatitis B or C (though the ciguatera epitope has been found to be positive for one of these), severe obesity, iagrogenic (medication side effects), lupus, multiple sclerosis, cancer, major depressive disoder (MDD, which the NIH tried to prove, a decade earlier, was CFIDS/ME that they called "CEBV" at the time but low or normal cortisol levels were found instead of high as in MDD which led them hide the results for over two years), cancer, anorexia nervosa, bulimia nervosa, schizophrenia, bipolar disorder and dementia.
The booklet includes "selected CFS reviews" and those listed are by only authors that were from the NIH and the CDC or those who collaborated with them such as the late Steven E. Straus and the late Nelson M. Gantz. They also list the American Association for Chronic Fatigue Syndrome along with their address, telephone numbers and website. That organization was still in its infancy at the time but was controlled by our federal government from the get-go.
Their conclusion is that there is "a great deal of controversy and speculation" surrounding the "syndrome" yet they implore the physician to treat these patients "with compassion." Shouldn't every illness, whether psychological or otherwise, be treated with compassion? Why can't they be compassionate enough to be truthful? And why haven't they made it more public that ME as well as CFIDS are merely "similar" and not the same? Is that why the CDC heavily funded CFIDS Association of America (CAA)? And is that why the CAA never refers to "CFS" as CFIDS anymore? Do they, like the government, not lie---but merely omit the truth? (1) "Chronic Fatigue Syndrome - A clinically empirical approach to its defintion and study", BMC Medicine, 2005, 3:19, William C. Reeves, Dieter Wagner, Rosane Nisenbaum, James F. Jones, Drian Gurbaxani, Lau Solomon, Demitris A. Papanicolaou, Elizabeth R. Unger, Suzanne D. Vernon, Christi Heim (2) "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study", Annals of Internal Medicine, 1994,121, Fukuda et al
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