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Site not updated since August, 2005
Sharon Briggs
Being ill since 1981 with CFIDS affords one a unique perspective.
I have 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 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!
Emotions and CFIDS
http://www.shasta.com/cybermom/emotions.htm
CFIDS SUFFERING CAUSES DEPRESSION
The symptoms of CFIDS are not psychosomatic consequences of negative emotions. Rather, the negative emotions are more often a result of suffering from CFIDS. We see the same manifestation in patient's with diabetes, kidney failure, cancer, heart disease and a long list of others. Those negative emotional symptoms are usually treated concurrently with the primary illness. ...
A comprehensive study of 1200 patients with CFIDS by
Rosamund Vallings, MD from the University of Auckland, New Zealand, demonstrated that CFIDS might have a "typical" personality type. She found that most people with CFIDS have the following personality characteristics:
- High academic achievers
- Competitive sports people
- Obsession with body shape and image
- Obsession with detail
- Rigid disciplined lifestyle
She also found that those with CFIDS, who had the above characteristics, changed their focus when the illness began. CFIDS often led to loss of control over health and life, so that other controlling characteristics may emerge, such as obsession with detail over health, rigid dietary adherence, control of the family with dependency, etc. These patients often dislike the feelings of loss of control over their own bodies imposed by medications and the sense of "takeover by medical professionals.
They feel misunderstood and badly treated which leads to a form of "medical paranoia". They drift from one health professional to another in the endless search for understanding and are thus often labeled hypochondriacal, somaticizing, or suffering from a psychiatric disorder, the very label they fear most. The psychiatric label represents to them further loss of inner control, self esteem, and the constant need to affirm the organic rather than psychological aspects of the illness....
Other studies have demonstrated the neuropsychiatric effect of elevated cytokines on the brain, and the resultant neurochemical abnormalities that often lead to depression and emotional lability. Specifically, the neurochemical serotonin has been shown abnormally low in CFIDS. (Nancy Klimas MD, University of Miami School of Medicine and Janice Kiecolt-Glaser, MD, Ohio State University Medical School, Columbus, OH)
CHANGED PERSPECTIVE
All of these negative emotional reactions can cause stress in the CFIDS person’s life. This illness tears away at every emotion until it humbles the patient. However, there is a positive aspect. Patients with CFIDS come to realize that regardless of the economic or social status, or the life-changing events created by having this disease, they share certain camaraderie with other CFIDS sufferers. Many patients say if they get well, they will never be the same. CFIDS gives a new perspective to life with the realization that we are truly dependent upon our health. It opens our hearts to the suffering of others, and it opens our minds to the restructuring of our lives when we recover.
NEGATIVE EFFECTS OF STRESS
- Increased levels of cortisol and adrenaline.
(This is extremely helpful if you are being chased by a grizzly bear,
but day in and day out it is disastrous.)
- Depressed natural killer cell activity
- Decreased interferon levels
- Increased cytokine production
- Reduced levels of neurotransmitters such as serotonin
- Disrupted normal sleep cycles
- Reduced numbers of T helper cells
- Decreased IgA production
- Muscle tension and spasm
- Disrupted gastrointestinal function
DEPRESSION
Depression is a common side effect of having CFIDS. When those with CFIDS are under stress for a long period with no end in sight, they are at risk for becoming depressed over the very prospect of living the rest of their life in their condition.
Depression is said to be the result of the five D’s:
- Dejection
- Despondency
- Discouragement
- Despair
- Dismay
DEPRESSION AND THE THYROID
According to preliminary findings by Robert Stern, Ph.D., assistant professor of psychiatry and neurology at Brown University in Providence, RI, women who tested just slightly below normal in thyroid function seemed to be more susceptible to episodes of depression than women whose hormone levels were normal. There are other intriguing links between thyroid function and depression.
"Lab tests reveal that 5% to 20% of people with depression have a slightly overactive thyroid even though they show no symptoms", notes Dr. Stern. "And, although we don’t know why, some depressed patients with normal thyroid function don’t respond to antidepressants unless they’re also given thyroid hormones."
Other sections on this page;
BLUES BUSTERS, CAUSES OF NEGATIVE EMOTIONS
Mycoplasma and CFIDS
http://www.shasta.com/cybermom/putting.htm
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.
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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)
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.
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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 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! ...
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]
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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.]
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.
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. -- antibody tests are worthless on these strains of Mycoplasma because they are intracellular.
Sleep and CFIDS
http://www.shasta.com/cybermom/sleep&.htm
Sleep and the Immune System
Over the last several years, research studies have demonstrated that certain cytokines and products of infectious organisms have sleep-promoting effects. Of these, IL-1 has been investigated most thoroughly due to its importance to the immune system and its sleep promoting capabilities.
Beginning in the 1980's, Dr. Moldofsky from the University of Toronto, Canada, has been investigating changes in IL-1 activity and related immune and endocrine functions over the sleep-wake cycle. For example, the activity of certain natural killer cells (NK), which are an important part of fighting off an infection and are thought to have a major role in CFIDS pathology, (Most of us have abnormally low levels of NK cell activity.) declines with sleep and reaches its lowest levels in slow wave sleep ( SWS, or deepest sleep) during the night.
In women, the timing of the SWS and decline with NK cell activity also differ with plasma progesterone levels during the menstrual cycle. The diurnal pattern of these cytokine, immune, and endocrine function are altered with 40 hours of nocturnal sleep deprivation, however.
In addition, studies of CFIDS patients which measured sleep, immune, endocrine and other levels, demonstrated a correlation between severity of symptoms reported and reduced levels of SWS recorded in their sleep. Thus, a direct correlation can be demonstrated between lack of quality, restful sleep and CFIDS symptoms, as well as, increasing immune and endocrine abnormalities.
SLEEP IMPORTANCE IN CFIDS
Since 90% of CFIDS sufferers complain of some type of sleep disturbance, it would help to review the sleep patterns that are common. During the early stages of CFIDS a pattern of hypersomnolence (excessive sleep) is common. These people are typically sleepy all day long and can easily fall asleep most any place or time. This group of CFIDS patients may sleep a total of 12-18 hours a day. They are, however, very light sleepers, and are easily aroused by light or sounds. Their nocturnal sleep is dreamless, restless and light. They usually arise in the morning or after a nap unrefreshed (in fact, they often say they feel worse upon arising than they did before they went to sleep).
After having CFIDS for a while, another pattern emerges, one of insomnia.
These people have difficulty falling asleep at all times, have difficulty staying asleep, and typically sleep less than 5 hours a day. Their sleep is also dreamless, restless and light. But, unlike the earlier pattern, they do not feel sleepy during the day and cannot nap. Consequently, they become exhausted from lack of sleep.
Both groups demonstrate a characteristic pattern of SWS patterns on EEG, what changes is the quantity of sleep, the elevation of immune/endocrine abnormalities, and the increase in severity of other symptoms. When both groups of CFIDS patients have in-depth sleep studies done, one interesting fact emerges; our sleep patterns at night look like a person who is awake during the day and our daytime awake patterns look like a person who should be asleep. No wonder we can't think! Our brains are asleep!
TREATMENT
After reading the studies of CFIDS and sleep problems, it becomes clear that sleep is very important, not only for our day-to-day function, but also to recovery. Treatment is aimed at increasing the quantity and quality of deep, restful sleep. The benefits are improved cognition, mood, pain, immune and endocrine function.
The varieties of sleep inducers range widely from sleeping pills to the more natural herbal products. Most products that induce sleep are taken just before bedtime. Most sleep aides help a person fall asleep and stay asleep.
Sleeping pills require a prescription, and are often habit forming, however, few CFIDS patients can tolerate their long-term use. Herbs, such as Valerian, and a brain hormone called Melatonin are readily available in drug and health food stores. They come in the form of teas, tablets, sublingual pills, and sustained release capsules. (In order to last all night).
Our brain naturally produces another form of sleep inducer.
It is called serotonin, a brain neurotransmitter.
The level of serotonin can be elevated with what are called SRI's (serotonin reuptake inhibitors or anti-depressants). SRI's are prescribed for those who are depressed and work by simply re-cycling the serotonin produced by the brain. The dosage for CFIDS patients should be much lower than for that of a depressed person, however, to avoid side effects. For those of us who can not tolerate any of the above SRI's, there is HOPE!
5-Hydroxy Tryptophan (5-HTP).
5-HTP supplies the brain with the form of tryptophan it needs to produce serotonin and eventually melatonin (as well as other important immune/endocrine connectors). Thus, 5-HTP helps us get to sleep and stay asleep, reduces pain, elevates mood, and improves immune/endocrine function. And, it does it all naturally by our own bodies!
5-HTP comes in strengths of 50mg and 100 mg.
5-HTP is best taken with juice and vitamin B6 about 30 minutes before bedtime. Your brain then uses 5-HTP to make serotonin. Natural food sources of tryptophan can be found in Soya protein, brown rice, cottage cheese, fish, liver, lamb, peanuts, pumpkin, sesame seeds and lentils. The body takes these food sources and produces 5-HTP.
EXERCISE and CFIDS
Paul Cheney, MD of the Cheney Clinic in North Carolina, a clinic specializing in CFS/FMS since 1994, comments on recent knowledge concerning exercise. He cautions against aerobic exercise—-any kind of sustained activity, such as running or walking or swimming, designed to raise the heart rate and increase oxygen flow throughout the body.
... exercise beyond a certain point can further damage the mitochondria (energy producing part of the cells). This system appears to be malfunctioning in CFS/FMS patients and is vulnerable to excessive aerobic exercise. (In a previous Shasta CFIDS newsletter, a report on the role of L-Carnitine on improving the mitochondria of the cells shows promise. The recommendation is for 3-4 grams of L-Carnitine a day. Enterprise Pharmacy can compound the prescription for you.)
... our anaerobic system appears to be in much better shape.
This allows people to maintain muscle tone and strength with such exercises as weightlifting, isometrics and stretching. He recommends a routine of 10 seconds of activity followed by 60 seconds of rest. One particular activity he has found to be useful is rebounding or bouncing, using a bungee cord contraption called a bounce-back chair. .. Its benefits seem to related to the physiology in Chinese medicine of balancing body systems, as it seems to help restore the autonomic nervous system balance that is out of whack in CFIDS patients.
The CFIDS Chronicle, July/August, 1998
Report on NIH & CFSCC Meetings February 6-8, 2000
http://www.shasta.com/cybermom/registryreport.htm
The Registry was chosen from a lottery to speak before the CFSCC. Rather than send our newsletter or videos, which we had done twice before, we appeared in person, because we felt it was a pivotal time in the history of CFS. That assessment was correct.
After the meeting disbanded, we asked the moderator, Gail Cassell, Ph.D., if we could speak to her. Dr. Cassell is a Professor of Microbiology from the University of Alabama, whose specialty is the pathobiology of mycoplasmal infections. She has been a long time advisor to the NIAID. She is Vice President of Infectious Disease Research at Eli Lilly and Company besides remaining a faculty member at the University of Alabama.
Dr. Cassell is the author of numerous excellent medical journal articles on mycoplasmas. Mary and we spent nearly an hour describing the Mycoplasma Registry's statistics, immune system supplements, and our recovery using antibiotics. We discussed scientific research that proved that mycoplasmal infections are contagious and is one main cause of CFS. Her own peer reviewed journal articles essentially confirmed the serious contagious nature of mycoplasmal infections. ...
Dr. Helen Mayberg ... is a brain scan expert serving on an advisory committee for the CFS Center at the University of Washington. Dr. Mayberg stated that she had never come across any grant proposals for CFS research.
Dr. Kevin McCulley
A physiologist from Georgia, Dr. McCulley stated that exercise may be beneficial for CFS if done in extreme moderation. He warned that athletes often had a "crisis moment" in their lives that coincided with overtraining, which precipitates a full body crash. This in turn creates a "brain/sensory organ feedback overload loop" that delays recovery. Dr. McCulley suggested a possible connection to CFS. He found the blood of these athletes hyper-coagulated.
During breaks we spoke with the two GAO investigators, who attended both the NIH and the CFSCC meetings. Mycoplasmas are the most likely cause of CFS/FM/Gulf War Illness, we explained. The NIH and the CDC were conducting a cover up, we added, which might explain the diversion of funds and why no cure had been found in twenty years. The DoD had obtained the patents to the two most virulent mycoplasmas showing up in Gulf War Veterans and CFS/FM patients, we revealed. Gulf War Veterans may have contracted their illness from experimental vaccines given to them before they left for the Gulf War, we suggested. That could explain, we added, why they did not record shot records, had claimed to lose them or announced they were classified. Civilians with CFS/FM are now ill from these contagious pathogens. ...
The reason we are calling for the GAO to recommend the end of funding to the CDC and NIH for CFS research is simple. When it becomes obvious that the health organizations funded to find a cure for our illness are instead actively engaged in using those funds to prevent the finding of a cure, then the only choice left is to stop the flow of money. ...
The "gene expression" analysis theory sponsored by Dr. Reeves, designed to find a marker in patients, appears to be the research of Dr. Howard Urnovitz. His theories on endogenous retro- viruses and "re-shuffled genes" have been around for sometime. He claims that sick Gulf War Veterans have distinctive DNA fragments that environmental toxins in the battlefield have activated. The DoD has long been supportive of his theories, despite the lack of scientific proof. These DNA fragments, as suggested by Dr. Garth Nicolson, may be mycoplasmas that have disintegrated in the blood, producing what appears to be novel viruses, which in actuality do not exist. ...
Mycoplasmas can cause nearly every sign and symptom discussed by the scientists and researchers on the panel. They create dysregulation of the HPA-AXIS. They cause hyper- coagulation of the blood and drain ATP function from individual cells, causing exhaustion. Mycoplasmal infections cause apoptosis (cell death) by activating "programmed death" genes within the cell. They can cause a significant mental dysfunction that is often mis-diagnosed as an emotional or psychological problem.
Mycoplasmas have been found in every tissue of the body, including the brain and the bone marrow. Once patients have used antibiotics, they recover. When they retest patients, the mycoplasmas are absent, just as Dr. White required as validation of infection. In fact, brain autopsies have already been performed and they found brain lesions, extensive cell damage, even necrosis, all of which was caused by mycoplasmas alone. ...
Dr. Donta stated that 35-40% of all Gulf War Veterans in the study were testing positive for mycoplasmal infections. Of that percentage, 80% were positive for Mycoplasma fermentans, 30% for Mycoplasma genitalium, and 3% for Mycoplasma pneumoniae. The study is scheduled to be completed and published within two years.
Statistical analysis by Dr. Donta is significant in that 80% of the Gulf War Veterans who had tested positive for mycoplasmas were testing positive for Mycoplasma fermentans. We consider this the most virulent mycoplasma species in existence. In civilians, even in those with multiple mycoplasmal infections, nearly every CFS/FM patient who is infected, is positive for mycoplasma fermentans. This is a direct parallel between Gulf War Illness and CFS/FM.
The study refused to include a test for Mycoplasma penetrans, the other species the DoD obtained the patent for. Mycoplasma penetrans might have been found in high percentages of Gulf War Veterans, but now we will never know. Mycoplasma hominis is also not part of the study. It has long been our contention that Gulf War Veterans may have received classified experimental live attenuated vaccines for Mycoplasma fermentans, Mycoplasma penetrans, Mycoplasma genitalium, and Mycoplasma pneumoniae. ...
Written Testimony,
Chronic Fatigue Syndrome Coordinating Committee
2-8-2000, Congressman Bob Filner,
http://www.house.gov/filner/
... What amazes me is the current so-called "treatment" of patients diagnosed with PGWI, CFS, or Fibromyalgia. They are first treated as being mentally ill, depressed or under stress, put on strong, often addictive, pharmacologic drugs, given minimal disability payments, told they have a non-contagious "syndrome"--even when other family members come down with the disease and they test positive for mycoplasma and other infections. They are then forced to fight the VA, HMO's, and health insurance companies in order to obtain antibiotics, and when they do use them and begin to recover, they are told by their respective health officials that they aren't actually sick from mycoplasma. ...
Oral Testimony of Sean and Leslee Dudley
Mycoplasma Registry
We are Sean and Leslee Dudley. Three years ago we began the MYCOPLASMA REGISTRY for Gulf War Illness and Chronic Fatigue Syndrome to track patients who tested positive for mycoplasmal infections. We did so because the CDC refuses to. Mycoplasmas are pathogenic and contagious. Sixty per cent of the people on our Registry have at least one other family member who is also infected. Both Sean and myself, and the entire Beaudoin family, who are speaking today, are typical cases, since Mycoplasmas are a family disease!
We ourselves have had positive mycoplasma PCR tests from our blood, bone marrow and synovial fluid. We and hundreds of people on our Registry are recovering using long term antibiotics. ...
CDC researches are thieves because they stole $12.9 million dollars of our money. We demand the money be returned immediately to fund a double blind, cross over study of mycoplasmal infections in CFS/FM patients. We demand that these studies be done outside the CDC, by Dr. Garth Nicolson. It is because of the Nicolsons' heroic research that the major cause of both Gulf War Illness and Chronic Fatigue Syndrome has been found. We and thousands of others owe them our lives.
CDC researchers are liars because they claim that mycoplasmas are not contagious, despite research that indicates mycoplasmas can be passed to others through saliva. Mycoplasmas are capable of infecting all cells of the body. Fresh blood products, which do not require mycoplasma testing, could also contain mycoplasmas from pre-symptomatic donors. Mycoplasmas can even pass through the mother's placenta into newborns, where they cause serious illnesses, septicemia, even death.
CDC researchers are corrupt because their polices on CFS conforms to the dictates of the Department of Defense, not the Congress of the United States. Mycoplasma fermentans incognitus and Mycoplasma penetrans, the two most virulent mycoplasmas known, have had their virulence enhanced by bio-engineering. Patents for these two mycoplasmas were obtained by the Department of Defense, yet the DoD officially denies that mycoplasmas cause disease. The DoD used doxycycline to treat patients infected with Mycoplasma fermentans incognitus as far back as the 1980's, while CFS and GWI patients with this infection have gone untreated for two decades. ...
Antibiotics as Treatment
For some patients, antibiotics produce complete recovery.
For others, antibiotics are an effective treatment that greatly improves their lives. There are various explanations for the different responses from patients, including the length of the illness before starting treatment, the number of mycoplasma species found in the patient, other infectious agents present including chlamydia pneumoniae and HHV-6a, the patients' strict adherence to the treatment protocol, correct dosages, using the most effective antibiotic for individual mycoplasma species, the use of prescription drugs by patients that interfere with absorption or efficacy of the antibiotics, reinfection from other untreated family members or pets, and many other reasons. Not to be forgotten is the fact that the disease itself has been bio-engineered to be both virulent and antibiotic resistant
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