Brain & Tissue Banks For Developmental Disorders
Donating parts of our bodies to science is a topic that some people do not ever want to think about. But, I find this newsworthy to mention for others who shudder at the thought of future generations suffering as we do. CFIDS patients who want to volunteer for research for those that follow behind us ... can donate brain tissue. Costs for this type of donation are often a burden to the family but in this case it is not. To learn more you can visit their web site or call the 800 number below and ask them to send you the CFIDS Donation Information Packet.
Attn: Doreen
University of Maryland
Dept. of Pediatrics
Rm. 10-035 BRB
655 W. Baltimore St.
Baltimore, MD 21201-1559
800.847.1539; 410.706.1755; fax: 410.706.0020
H. Ronald Zielke, Ph.D., Director
Web Site: www.sturge-weber.com/respart.htm
Undiagnosed Childhood Polio Causes Chronic Fatigue
Dr. Bruno would like to correspond with baby boomers born before 1955 who have been diagnosed with CFS/ME who had a childhood illness that caused fever, fatigue—maybe a stiff neck and muscle weakness—in the years before the polio vaccine was administered (please see below). Please e-mail polioparadox (at) aol (dot) com
Thank you!
Englewood Hospital and Medical Center
Fatigue Management Programs
The Post-Polio Institute; International Centre for Post-Polio Education & Research
Englewood, NJ. May 20, 2002
Undiagnosed Childhood Polio Causes Chronic Fatigue Syndrome in Women Baby Boomers
Undiagnosed childhood polio infection is a cause of chronic fatigue syndrome in women baby-boomers. This is the conclusion of the 2001 International Chronic Fatigue Survey conducted by Dr. Richard L. Bruno, chairperson of the International Post-Polio Task Force and director of The Post-Polio Institute, The International Centre for Post-Polio Education and Research and Fatigue Management Programs at New Jersey's Englewood Hospital and Medical Center. Bruno wondered if polio might be related to CFS in baby boomers after a 1999 study by Leonard Jason found that half of the estimated 836,000 Americans with CFS are at least 40 years old. Jason concluded that baby-boomers may be at greater risk for CFS. Bruno thought that baby boomers' greater risk might be related to their having had an undiagnosed poliovirus infection in childhood, since they would not have been vaccinated against polio until at least 1955 when the Salk vaccine was distributed. Bruno suspected the poliovirus as a cause of chronic fatigue because of his twenty years of studying and treating polio survivors with Post-Polio Sequelae (PPS), the unexpected and often disabling symptoms—overwhelming and chronic fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing—that occur in paralytic and of "non-paralytic" polio survivors about 35 years after the poliovirus attack.
"It has been known since 1947 that the poliovirus damages brain stem neurons that activate the brain, the 'brain activating system' that keeps the brain awake and focuses attention. Whether or not poliovirus damages spinal cord neurons that move the muscles," says Bruno. "Some diagnosed with so called 'non-paralytic' polio were found to have severe damage to the brain activating system, and have severe fatigue today, even though they had no muscle paralysis."
Fifteen years of Post-Polio Institute research has found evidence of brain activating system damage in polio survivors with brain fatigue, including lesions on MRI of the brain, attention deficits on neuropsychologic testing, reduced levels of brain activating hormones, and brain wave slowing. "These abnormalities are identical to those in CFS patients," says Bruno. "We believed that the poliovirus damaged brain activating neurons and causes the signs and symptoms of fatigue in both polio survivors and some baby boomers with CFS."
To test this hypothesis Americans, Britons and Canadians diagnosed with CFS or ME (myalgic encephalomyelitis, as CFS is called outside the US) were surveyed and asked if they'd had a childhood illness—a fever that left them fatigued for several days, a stiff neck or muscle weakness—in the years before the polio vaccine was distributed in 1955. Two-thirds of the 586 chronic fatigue patients who responded were born before 1955. They were on average 61 years old, just 4 year younger than polio survivors' average age in Bruno's previous International Surveys of over 3,000 polio survivors. Twenty percent of chronic fatigue patients born before 1955 were able to remember an illness with a fever, typically in 1947 when they were seven, which was the average age of a polio patient in 1947.
"Just over one-third recall having had a stiff neck—the 'red flag' symptom of polio—about one-third were hospitalized and almost two-thirds remember having had muscle weakness," says Bruno. Remarkably the distribution of childhood illness cases in the baby boomers was nearly identical to the distribution of reported polio cases in the US and UK between 1935 and 1955. "What's more 90% of baby boomers with CFS/ME are women," says Bruno. "This is exactly the same percentage of women affected in the 1948 chronic fatigue epidemic in Iceland that was found to be caused by the Type II poliovirus." And CFS/ME patients who do remember a childhood illness are more affected than CFS/ME patients who did not remember an illness: baby boomers report more difficulty with concentration, thinking clearly, word finding and joint pain, have had more episodes of fainting, and are more likely to have sleep disturbed by abnormal breathing and muscle twitching. "Our findings suggests that a relatively mild childhood illness occurring before polio vaccination began in 1955—likely caused by the poliovirus damaging the brain activating system—sets the stage for mid-life symptoms that are identical to the 'brain fatigue' reported by polio survivors and patients with CFS/ME," says Bruno. Says Bruno's collaborator on the Survey, Dr. Elizabeth Dowsett, creator of the CFS Diagnostic and Management Service in Essex, England, "Dr. Bruno's research shows that there is very little, if any, difference between CFS, ME and PPS."
"There is no question that neither the naturally occurring poliovirus nor the Sabin oral polio vaccine causes CFS today," says Bruno. "But the possibility of a non-paralytic poliovirus infection in childhood causing chronic fatigue in middle-aged baby-boomers is a reason for hope." The Post-Polio Institute's research has found that conserving energy, daytime rests breaks, stopping activities before fatigue starts, and a higher-protein diet significantly reduce symptoms of fatigue in polio survivors and CFS/ME patients.
Bruno describes his research on PPS, the baby boomer study and the fatigue treatment program in detail in his new book, THE POLIO PARADOX: UNCOVERING THE HIDDEN HISTORY OF POLIO TO UNDERSTAND TREAT "POST-POLIO SYNDROME" AND CHRONIC FATIGUE, to be published by Warner Books on June 4, 2002.
"When baby boomers report symptoms of chronic fatigue, doctors need to ask if they had a childhood illness with a fever, stiff neck or muscle weakness that occurred during the polio epidemic years," says Bruno. And whether or not chronic fatigue patients recall a childhood illness, the finding that over 50% of those surveyed had symptoms of abnormal nighttime breathing and that 80% had nighttime muscle twitching requires that a sleep history be taken in anyone reporting chronic fatigue and that sleep studies be performed so that disturbed sleep as a cause of fatigue—in polio survivors and chronic fatigue patients—can be ruled out or treated.
Englewood, NJ. May 20, 2002; Posted on behalf of KIDS Fatigue Management Program at Englewood Hospital CFSENG (at) AOL (dot) COM
Brain Injury Indicated
Researchers at UT Southwestern Medical Center in Dallas, have found indications of brain damage in Gulf War veterans caused by exposure to neurotoxic chemicals. The results suggest substantial loss of brain cells in the brain stem and basal ganglia. These parts of th ebrain control reflexes, movement, memory and emotion. Injury to these areas can cause problems with attention, concentration, pain, balance, depression and mood swings.
Magnetic resonance spectroscopy (MRS), which uses radio waves to measure body chemistry, found the veterans had up to 25% less of a particular brain chemical (N-Acetyl-Aspartate) than healthy veterans. Given the similarity in CFIIDS and GWS, it is interesting that this test also picks up many abnormalities in the brain of CFIDS patients. Several CFIDS researchers believe there is neurotoxic injury to the lower brain in CFIDS patients, though now necessarily due to exposure to toxic chemicals.
This information came from our January 2000 newsletter.
Hypnotherapy
Recently featured on NBC's local news health segment, hypnotherapist Edward Joseph is one the few practitioners in Texas of EFT (Emotional Freedom Techniques). EFT involves tapping on the body's energy meridians to eliminate negative emotions. One of FMS patients reports that she feels better than she has in ten years through the use of hypnotherapy and EFT. Ed can be reached at 827.589.7407
This information came from our January 2000 newsletter.
CFIDS Study Shatters Myths
Working under an NIH grant, DePaul University researches disovered some shocking truths about CFIDS. Researchers randomly surveyed over 28,000 people and determined that as many as 800,000 people suffer from CFIDS, twice the number previously estimated by the CDC. The rate for women is 522 per 100,000; for men, 291. CFIDS in women is 15 times more common than AIDS. Latinos (726/100,000) and African Americans (377/100,000) are at greater risk than Causians (310,100,000).
CFIDS prevalence was highest among skilled craftsmen/women, clerical, and sales workers; second highest among unskilled laborers, machine operators, and semiskilled workers; and lowest among professionals. Before the onset of CFIDS, 59.3% of the CFIDS patients had never experienced a psychiatric illness—including depression. Only 10% of the CFIDS patients identified by the study had been previously diagnosed. This study shattered many sterotypes about CFIDS patients, establishing that CFIDS sweeps across all boundries of race, gender and class, is not "all in your head". and goes largely undiagnosed.
A brochure is available at cinda.org/support/pamphlets.shtml includes a quote from a 1995 Congressional CFS Briefing by specialists mark Loveless, M.D. He states that a person with CFS is "as ill as an AIDS patient in the final two months of life." The brochure also includes the oft-quoted information that CFIDS can leave patients more functionally impaired than congestive heart failure, multiple sclerosis, and end-stage renal disease. While valid, remember that the range of severity for CFIDS patients goes from quite severe to mild to moderately ill. Such quotes are not meant to frighten or discourage people, but to validate those who are seriously ill and met with disbelief from family, friends and the medical community.
The results are published in a breakthrough study in the Archives of Internal Medicine, October issue.
This information came from our January 2000 newsletter.
