Historical Aspects of CFS
from cfids.org

HISTORICAL ASPECTS

• In 1975, the first reported epidemic of CFIDS occurred which involved health care workers at the Mercy San Juan Hospital in Carmichael, CA. Most of those cases are still being treated by Dr. Erich Ryll of Sacramento, CA.
• In 1984, the second, third and fourth epidemics occurred in the same year. The first epidemic occurred in teachers and students at Truckee High School (near Incline Village, Nevada); the second at an elementary school in Lyndonville, New York; and the third in New Zealand. Three of the physicians who were involved in those outbreaks are still very much involved with research and treatment today (Dr’s Dan Peterson and Paul Cheney from NV and Dr. David Bell from NY). In the three USA epidemics, the CDC became involved in the investigation. Blood studies were done on the victims. Cultures were taken for all known viruses, bacteria, mycoplasmas and rickettsiae, and all were reported to be negative. From the outset, the new disease was discounted by the government agencies. Most of the children from the NY outbreak were treated with antibiotics. It was not prescribed for the new disease, but rather for infections that occurred because of their deficient immune systems; (i.e., the usual things that children experience—strep throat, ear infections, etc.—occurred more frequently and with more serious complications). Perhaps, as a result, a majority of the children in the NY outbreak have recovered. Most of the adults from the NV and NZ outbreaks did not receive antibiotic treatment as a routine, however, and most are still very ill.
• In 1985, the physicians in NV began to see a change in the antibody response to the Epstein Barr Virus (EBV) in their patients. The test (called a titer) indicated that they had a reactivation of an old infection. At first, they thought they had found the cause of their new disease and called it Chronic EBV. But, they witnessed the EBV come and go, and the disease remains. It was soon evident that the Epstein Barr infection was only one of many viruses and fungi that would occur in their severely immune deficient patients.
• In 1986, the National Cancer Institute of the NIH discovered a new human virus that they first named HBLV, and then renamed HHV6 for Human Herpes Virus number 6. Most recently, this virus has been split into variant type A and B. There was another flurry of activity and claims that this virus was the cause of our disease. But, this has not proved to be the case, however, studies still continue.
• In 1988, the Center for Disease Control (CDC) convened a symposium featuring many prominent researchers of this disease from across the country. The name Chronic Fatigue Syndrome was officially coined and criteria for diagnosis were formulated.
• In 1994, CFS and Fibromyalgia support groups were merging, and research was indicating that the two diseases had similar laboratory results.
• In 1995, the CDC announced that CFS had been added to their list of Priority-1 New and Emerging Infectious Diseases.
• In 1996, many troops who came home sick from the Gulf War, were said to also exhibit the same (but, more severe) symptoms of CFIDS. Since the war, approximately 70,000 veterans have become ill and 8,000 have died!
• In 1998, ten years after the first case definition was published and accepted by the CDC, there has been little change in the government’s approach to the disease. In the ten years since the official designation of CFS, most of the research regarding our disease has been funded with private money. If any government funding was done, it was allocated for study of the epidemiology, immunology of CFS, and/or the psychological aspects the disease. But, virtually no federal funds have been granted to independent researchers for the etiology of the disease.
  Even though funding for the cause and cure has been absent, the CDC still maintains that CFIDS is a severe and life-altering disease.
  

It has recently been revealed that money appropriated by congress, specifically earmarked for CFIDS research, was diverted into other programs. Dr. William Reeves, in charge of CFIDS research at the CDC (and, at one time, thought to be part of the problem), invoked the protection of the Whistle-Blower’s Act. This scandal exposes the knowledge that the CDC has intentionally misrepresented monies allocated to CFS research. The misrepresentations involve systematically diverting between $1-2 million between 1995-97. Now, the task begins to restore the lost funding, allocate new funding—for appropriate etiology studies—and help the government recognize the seriousness of this disease and their obligation to more than a half a million Americans who suffer with it every day.

REVELATIONS OF PERSONAL RESEARCH
Since I had a positive test for a new stealth pathogen named Mycoplasma fermentans incognitus five years ago, I have been curious as to how, why, and when I contracted it. Having been on antibiotics for four years, I am nearly well!!! Could this pathogen have been the cause for CFIDS in my case? I believe so. My research into this new pathogen has led me to some interesting revelations.
Recent research has lead me to conclude that our disease is relatively new and emerging along with many others like Lupus, Multiple Sclerosis, Reactive Arthritis, Post Viral Syndrome, Lyme Disease, etc.

My research has led me to the term "STEALTH PATHOGEN". A stealth pathogen is one that can cause infection by invading the cells, thus hiding from the body’s immune system. Since the organism hides inside the cells, laboratory tests to determine their presence is difficult. Usual antibody tests are worthless. The only way to diagnose the problem is by culture and/or PCR. Often special body fluids or tissue samples are necessary (i.e., cerebral spinal fluid, synovial or joint fluid, bone marrow, glandular biopsies, muscle biopsies, etc.) The disease process develops slowly and the progress is marked with remissions and exacerbations.

Along with Mycoplasma, other pathogens may fall into this group. Most of these are the cell wall deficient forms (also called L-forms or spheroblasts) of common bacteria that can cause a serious disease state. Lida Mattman, Ph.D. of Wayne State University, writes about these pathogens in her book entitled Cell Wall Deficient Forms: Stealth Pathogens. She explains that ordinary bacteria and fungi are capable of mutating to a form that lacks a cell wall. When mutated to this state, they are more invasive (entering cells) and more pathogenic. She explains that the majority of unexplained negative lab cultures concern infection with these cell wall deficient variants of common bacteria.
In my research, I have also been interested in the autoimmune aspect of our disease (and others). This is easily explained if one understands how cell wall deficient organisms operate. Once they enter a cell they incorporate the cells energy source and food as their own. They are hidden from the body’s immune system at this time. While in the cell, they then multiply. They leave the dead cell in search of another. In leaving they take a piece of the cells membrane with it. During the brief time out of the cell, the immune system recognizes both the pathogen and the body’s own cell membrane and sets up a defense against them both. After the pathogen enters another cell, it is not affected by the immune system, but the reaction against the cell membrane sets into motion an attack on other cells of that type. Hence, we often have auto antibodies against our own tissues like thyroid, heart, muscles, joints, etc, which complicates the clinical course of the disease.

In comparing the diseases caused by these "stealth pathogens", I found many correlation's with CFS. There are many overlapping symptoms, many of he same abnormal laboratory tests, and if they are treated with the appropriate antibiotic—the same recovery rate. Another comparison is that they all "emerged" into the medical world at about the same time period—the past 20 years (i.e., Lupus, Multiple Sclerosis, Lyme, Fibromyalgia, Gulf War Syndrome).

DISTURBING THOUGHTS
Suspicion by a noted researcher Garth Nicolson, Ph.D. (originally of the M D Anderson Cancer Research Center in Texas and lately of the Institute for Molecular Medicine in Huntington Beach, CA) that the Mycoplasma fermentans incognitus was bioengineered in order to make it more virulent and useful for germ warfare was another revelation I was unable to handle, at first. Dr. Nicolson explained that he identified an alteration in the molecular structure of the Mycoplasmas he had found in Gulf War Veterans who were ill. The Mycoplasmas were found to have had an envelope gene from an HIV organism inserted into its nucleus (GP 120). This would make the organism more invasive and harder to treat. He explained that this insertion does not occur naturally, but can be "forced" using specialized laboratory techniques. (A mutation caused within a laboratory setting.)
While germ warfare is certainly not a subject that is pleasant or easy to think about, we cannot afford to bury our heads in the sand, either.

There are several books/sources that helped to shed light on this global problem:

• Emerging Viruses: Aides & Ebola—-Nature, Accident, or Intentional? By Leonard Horowitz
• The Extremely Unfortunate Skull Valley Incident, by Donald & William Scott (1996) Chelmsford Pub,
  ISBN # 0-9692622-1-3 (705)670-0180.
• The Eleventh Plague: Politics of Biological Warfare, by Leonard Cole. ISBN #E 0-7167-2950-4

Now that Dr. William Reeves has openly admitted that funds, earmarked by Congress for the study of CFIDS, were misappropriated by the CDC, the next question is WHY?

• Why has the CDC and NIH not funded any studies of suspected pathogens?
• Why was the diversion of funds used for psychological studies as the only explanation of CFIDS? Is there a hidden agenda?
• Could the diversion of CFIDS research funds be part of a larger governmental "cover-up" pertaining to germs engineered for war?
• Is there a connection between the testing of potential wargerms (such as Mycoplasmas &/or other intracellular "stealth pathogens") on civilian populations and CFIDS?
  

Consider the following information supplied by Elizabeth Naugle of the Candida & Dysbiosis Information Foundation:

It has been legal for the last two decades for the Department of Defense (DOD) to test chemical and biological warfare agents on civilian populations without their knowledge. [United States Code Annotated, Title 50, War and National Defense, Chapter 32, Section 1520. Passed into public law on July 30, 1977; quietly repealed on Nov. 18, 1997 as part of the DOD 1998-99 appropriations bill, after outrage voiced by Gulf War Vets.]

Prior to 1977, the University of Maryland conducted mycoplasma vaccine testing on prison inmates. [JAMA 199:353-58, Feb. 6, 1967]

In the early 1970’s, Mycoplasma vaccines and many viral agents were tested on inmates of the Texas prison system by doctors affiliated with the University of Texas, in Houston. [Ref: "Medical Research, Experimentation and Pharmaceutical Testing in the Texas Department of Corrections" by Robert Russell Bozzelli, 1974 Master’s Thesis, Sam Houston State University.]

Research done by a fellow sufferers, Sean and Leslee Dudley from the Mycoplasma Registry, led me to the possible connection between Mycoplasma and CFIDS. They led me to a researcher by the name of Shyh-Ching Lo. Lo originally filed a patent on Mycoplasma, with the US Patent Office in 1986. His laboratory research has taken him to Texas and to Maryland. Studies continued until 1996 when four patents were finally granted. The patents involved discovery of two Mycoplasmas with unique morphological and pathobiological properties. It explained that these Mycoplasmas did not appear to be related to any other species of human or animal Mycoplasma. These novel Mycoplasmas were called Mycoplasma penetrans and Mycoplasma fermentans incognitus.

The patents further explain that:

"These extraordinary pathogens are capable of causing chronic debilitating diseases and producing a variety of clinical manifestations and suppressing host immune defense mechanisms."

"Some patients who are infected with M. penetrans or M. fermentans incognitus can possibly be patients who have been diagnosed as having HIV infection, AIDS Related Complex, Chronic Fatigue Syndrome, Wegener’s Disease, Sarcoidosis, respiratory distress syndrome, Kibuchi’s Disease, and autoimmune diseases such as collagen vascular disease and Lupus and chronic debilitating diseases such as Alzheimer's Disease."

 

HOW DID SHYH-CHING LO KNOW THIS IN 1986???????
(Especially since the name Chronic Fatigue Syndrome had not even been coined until 1988!!!)

These Unique Mycoplasmas were deposited with the American Type Culture Collection in Rockville, MD (Otherwise known as the DOD depository for biological warfare).

In addition I think that it is very interesting that Dr. Lo used one main method—the Polymerase Chain Reaction (PCR) to detect the organisms studied in his patents. He did not utilize antibody tests. His patents explain the pathogen's ability to reside within human tissue cells and evade the detection of the immune system. However, when he corroborated in a CFIDS study with Anthony Komaroff, MD, David Bell, MD and Paul Cheney, MD (three noted CFIDS researchers), it was concluded that CFIDS patients DID NOT have Mycoplasmal infections based on an antibody test. [Absence of Antibody to Mycoplasma fermentans in patients with Chronic Fatigue Syndrome, Clinical Infectious Disease, 17(6): 1074-75 Dec, 1993.] Were the CFIDS doctors bamboozled? Those three independent labs that are reporting high positive results know that antibody tests are worthless on these strains of Mycoplasma because they are intracellular. Perhaps that is precisely why Lo corroborated with the CFIDS researchers——to falsely confirm that Mycoplasmas were not present in CFS patients so they would look elsewhere for a cause. Consequently, the results of the CFIDS/Lo corroborated study have left it difficult to convince the CFIDS researchers to look for Mycoplasmas in their patients. They refuse to believe, as valid, the high percentage of positives (by PCR) that those three different independent labs are reporting. (Reported: Institute for Molecular Medicine=75%, University of California-Irvine=70%, Immunosciences Lab=55%.)

CONCLUSION
How can we be so sure that CFIDS is not infectious if the government does not fund independent researchers to investigate any pathogenic organisms that might be present? Many of us with CFIDS, especially after reading the historical chronicle Osler’s Web by Hillary Johnson, are beginning to suspect a "cover-up" by the CDC, DOD and NIH regarding the CFS epidemic.

After 25 years since the first reported epidemic, we still don’t know much about CFIDS. Questions remain.

• What causes it?
• How is it transmitted?
• What tests can diagnose it?
• Who is at risk?
• How can it be treated?
• How can it be cured?
• How can it be prevented?
• How many people have it?
• How large is the public health threat it poses.
• Why does it continue to spread?
• How can it be stopped?
• Why does it occur in clusters within households and workplaces?
• Can the disease be passed from a woman to her unborn child?
• Can it be transmitted through breast milk?
• Can it be transmitted to or from household pets?
• Should persons with CFIDS avoid donating blood, blood products, or organs?

These are just some of the questions we should demand an answer to from our government. There is a growing network of support groups who are combining information and forces to try to unravel the origin of our diseases. The one’s who are most active are:

• The Mycoplasma Registry, 303 47th Street, No. J-10, San Diego, CA 92102-4801, (619)266-1116
• Candida & Dysbiosis Information Foundation, PO Drawer JF, College Station, TX, 77841-5146, (409) 694-8687
• The Road Back Foundation, 4985 N. Lake Hill Road, Delaware, OH, 43015-9249, www.roadback.org
• Keep Hope Alive, PO Box 27041, West Allis, WI 53227

Being ill since 1981 with CFIDS affords one a unique perspective. I have a been able to watch the chronology of CFIDS unfold firsthand. I have met many of the top researchers and my own blood has been sent to numerous research labs all over the world. My personal specialist is Dan Peterson, MD of Incline Village, NV. I have researched books and journal articles, attended medical conferences, talked with others who have the disease and are also support group leaders in a network that extends around the world. My research has not been limited to CFS, but includes Fibromyalgia, Multiple Chemical Sensitivities, Gulf War Illness, Lyme Disease, Lupus, Multiple Sclerosis, and others. I have viewed my illness as a unique opportunity to expand my knowledge base in an area of which I have extreme interest. I attempt to give you an account of my understanding of major events in hopes that you will also have a better perspective.
I would hope that this perspective has, at least, piqued your interest. I would also hope that you begin to do your own research, keep your mind open to new ideas and theories, and think for yourself. I encourage you to subscribe to several journals from national support groups and keep abreast of changes regarding your disease. I would also encourage you to develop your own network of knowledgeable CFIDS advocates. Do not rely upon your personal physician to answer all your questions. S/he cannot possibly know the answers if it is not common knowledge in the medical community. Do not play ostrich by sticking your head in the sand. If I had done that, I wouldn't be as well as I am today!

Written by Sharon Briggs

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