Sept/Dec, 2002
Upcoming Night meetings
October 14, 2002 -- 7:30-9:00 PM
Room 0029 
Allen Cave/AAA protective service (home security and safety)
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November 11th: Room 0029 7:30-9:00 PM
Judy with Two Women and a Map, to give us easy cleaning tips
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December 9th: Room 0029 7:30-900 PM 
Bring light refreshments to celebrate! 
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Trinity Group --- 1st Thurs of month at 1:00 PM. Trinity UMC, Trinity
Burlington Group --- 1st Mon. of month, Faith UMC: Myra Jackson (336) 229-7818 
Winston-Salem Group --- 2nd Thursday of mounth 336-723-7624  http://cfsfms.freeservers.com 

In Our World

From the DALE GROUP DATABASES:

Brain Scans and Chemical Injury.

Jule Kiotter, Townsend Letter for Doctors and Patients. 7/2002 Drs. Heuser and Wu, (Brain Imaging Center: University of California - Irvine) used PET brain scans of a small study group with solvents, pesticides or other neurotoxin-induced chronic health problems in the areas of memory, balance and cognition, irritability, panic attacks and emotional lability. Unlike the control group, their PET scans exhibited significant hypometabolism in many cortical areas’ and matched other chemically injured patients’ SPECT scan cerebral hypoperfusion areas, as well as demonstrating "significant hypermetabolism. . . in portions of the limbic system, extending into the cerebellum, visual cortex, and down in to the brain stem." Heuser and Wu remind us of hypermetabolism’ s association with seizures and panic attacks, noting "Our tentative conclusion is that the clinical picture of chemical intolerance with its behavioral and cognitive correlates can be explained on the basis of hypometabolism in many cortical structures and hypermetabolism in deep subcortical, including limbic structures."- Studies gheuser@ucla.edu 

Association of Health Problems with 50-Hz Magnetic Fields in Human Adults Living Near Power Transmission Lines There is ... evidence of association between environmental power-frequency magnetic field exposure and immune-related illnesses in humans significantly elevated odds ratios were obtained at higher exposure levels both for asthma and for combined chronic illnesses. The results are consistent with a possible adverse effect of environmental magnetic field exposure on immune-related and other illnesses .(Full paper available at http://www.acnem.org > click on Journal & articles section.)

50-Hz Electromagnetic Field Impairs Sleep Torb]orn Akerstedt, Bengt Arnetz, Gianluca Ficca, Lars-Erik Paulson and Anders Kailner 

"In view of reports of health problems induced by low frequency (50-60 Hz) electromagnetic fields (EMD, we carried out a study in 18 healthy subjects, comparing sleep with and without exposure to a 50 Hz/l uTesia electrical field [10mG]. We found that the EMF condition was associated with reduced total sleep time (TST), sleep efficiency, stages 3 + 4 slow wave sleep (SWS_, and slow wave activity (SWA). Circulating melatonin, growth hormone, prolactin, testosterone or cortisol were not affected. The results suggest that commonly occuring low frequency electromagnetic fields may interfere with sleep." 

Journal of Sleep Research (1999) Vol. 8, pp. 77-81 Courtesy: http://www.CO-CURE.org 

Britain Recognizes Gulf War Syndrome Is Real

LONDON - A British appeal tribunal has ruled that Gulf War Syndrome is real and was caused by active service during the war. Ministry of Defence doctors have maintained there was no such sickness, meaning that thousands of soldiers were unable to qualify for army pensions.

The case was taken by Gulf War veteran Shaun Rusling who appealed the initial ruling to the pensions appeal tribunal nine years ago. The ruling may have widespread and costly implications for the British government. The Ministry of Defence said it is studying the judgment.

The National Gulf Veterans and Families Association said this ruling should help all Gulf War veterans who have been trying for a pension for illness. James Moore, treasurer of the association told BBC News: "This is very significant because the course has now actually recognized there is a Gulf War illness, something we have been saying for years."

In a statement, the association added: "It is now accepted in legal terms that Gulf War Syndrome exists and that the Ministry of Defence has been actively trying to cover up the illness of Gulf War Syndrome and the serious health problems associated with it.

Veterans have been financially disadvantaged and had been unable to work. Many families have been broken up and marriages and health destroyed by further stress, and sadly many veterans have committed suicide after being told by the Ministry of Defence that Gulf War Syndrome does not exist."

According to the association, many veterans had been diagnosed by their own doctors as having Gulf War Syndrome but when they then applied for a pension they were tumed down by the government’s war pensions agency. - Karen Birchard. http://wwi~v. medicalpost.com/mdlink/english/members/medpost Ida ta/382 7/5 lB. HTM

CO-CURE JvR: Several ME/CFS studies have shown an increase serum TNF-alpha (proinflammatory cytokine), which is associated with pathology of the CNS. http://www.manwithfibro.com 

[MRII Paris - Tumor necrosis factor alpha (TNF-alpha) is known to widen blood vessels and increase blood flow in the peripheral nervous system. But Oxford-based scientist Nicola Sibson has now shown that this vasodilatory effect is reversed in central nervous system, where TNF-alpha is vasoconstrictive, a surprising finding that could lead to novel therapeutic possibilities for a range of disorders... TN-alpha has been associated with a broad spectrum of neuropathologies, from multiple sclerosis to cerebral malaria.

July Updates from Chip to The Fibromyalgia Community

Website - http://wwvv.fmscommunity.org 

Turnip’s Knowledge Base Disability Pages. These pages are for those who are applying for SSDI and include a listing of Advocates and Attorneys, Resources, Suggested Reading, Support and much more....  

http://wwvw:fmsscommunity.org/disability.htm 

NEW: Find an FMS doctor - The doctors listed here have been referred by FM/MPS patients who have had a good experience with the listed doctor and wanted to share their names with others who may be searching for a caring doctor who believes in and treats FM/MPS. http://wwwfmscommunity.org/flndingadoctor.htm  

NEW: FMS Community Photo Pages http://wwvv.bramhlerose.net/faces   !


"Be who you are and say what you feel, because those who mind don‘t matter and those who matter don‘t mind. - Dr. Seuss


LAWRENCEVILLE, NJ - The United States Patient Office has issued two patents to Vela Pharmaceuticals Inc. for very low-dosage cyclobenzaprine (less than 5mg per day). The patents cover the treatment of sleep disorders and generalized anxiety disorder (GAD). VelaPharm is a privately held pharmaceutical company specializing in the development of medicines for the central nervous system.

Cyclobenzaprine, approved by the FDA for more than 20 years for use as a muscle relaxant at higher does, is being studied by VelaPharm at very low does for improvement of the quality of sleep. Preliminary results are encouraging. Most drugs used to treat sleep disorders focus only on decreasing sleep latency--that is, the amount of time it takes to fall asleep--but do not answer the need for maintaining a high quality of sleep throughout the night, a need particularly prevalent among the elderly [Also] VelaPharm has recently completed a Phase II study using VLD cyclobenzaprine (results pending) and has filed for patent protection for the treatment of fibromyalgia. Preliminary results are encouraging.

DrugDigest: Cyclobenzaprine works on nerves in the spinal cord to dull nerve impulses or signals to the muscles. Dulling these nerve impulses will help relieve muscle spasms  .  - Submitted by: Rick, Omaha,NB 

Antiviral Drugs and HHV-6 is a challenging area.

Wisconsin Viral Research Group

The high incidence of ME patients testing positive for HHV-6 infection make these reports and observations very relevant to the search of drugs that have a significant effect in our disease... Ganciclovir is the only drug that has demonstrated its ability to successfully treat brain infections by HHV-6. It must be administered intravenously and can have serious side effects. At the present time, the most promising orally administered drug with respect to the treatment of HHV-6 infections is VALTREX (acyclovir prodrug), which has been shown to prevent HHV-6 associated illness in bone marrow transplant recipients... Effective against reactivation of HHV-6, but may not be effective in suppressing an active, chronic infection... Recently, transfer factor has been mentioned as a means of combating viral infections, including HHV-6. Transfer factor is in the colostrum present in mother’;s milk the first few days after delivery of a newborn. It is known to stimulate the immune system’s "memory" and therefore help the body’s own defenses increase their ability to fight infection naturally.

Researchers Treating Fatigue Syndrome with Cancer Drug   Health & Family Reporter Diana Gonzalez Miami - ... Researchers in Miami are working with a medication that could provide help for those suffering from the often debilitating condition. . . . Univ. of Miami researchers say they have found a physical cause and are testing a treatment. Jean Gaudreau. . . said she tried all sorts of remedies and saw several doctors. Then she said she heard about a study at Univ. of Miami, and traveled from her Merritt Island home to participate. Univ. Of  Miami researcher Barry Hurwitz  PhD. is working on the study. "In chronic fatigue about 60 to 70 percent of individuals we found have a deficit in red blood cell production and it’s not picked up by normal medical tests," Hurwitz said. "It’s not generally known in the medical community that there is this problem with red blood cell production." Hurwitz and the other researchers are testing Procrit, a drug used to treat anemia in cancer patients, in chronic fatigue sufferers. Half of the patients involved in the study are give Procrit, while the other half receive a placebo. The tests last 4 months The ongoing study is open to patients who have experienced persistent or relapsing fatigue for more than six months. To participate in the study, patients must also have experienced flu-like symptoms, trouble concentrating, and "non-refreshing" sleep - all symptoms of chronic fatigue. Participants must be between 18 and 55 years old.. 

Courtesy:  NBC6.net

Univ. of Miami CFS Study CFSresearch@miami.edu The patient in the story (JvR: see above) improved dramatically with the Procrit treatment. We still need many more participants, so please help get the word out to anyone with CFS. The study requires bimonthly visits to our office, so travel can be an issue for many. We have had patients from all over the state of Florida, and many use the Tn-Rail/Metro Rail to reach us, we are located steps from the Civic Center Station in Miami. The brochure explaining the timeline, as well as the forms to inquire about eligibility are at http://www.bmrc.miami.edu/research/niaid/project2.asp 

A MUST READ BOOK! "Blue Wave Coming", Barnes and Noble. Author is Hal Glickman (cover by Lizbeth Glickman, one of our Triangle MCS patients, and Mr. Glickman’s daughter). Synopsis: A romantic thriller: dealing with modem health complications, and the realities of worldwide air and water pollution.   From the Publisher: Michael Painter, chief chemist in a perfume mega-firm, finds his lifelong experience challenged by the realities of worldwide air and water pollution. The challenge, signaled by the chemical illness of his friend and assistant, Lillian Aronson, comes as he is about to supervise a new perfume triumph, based on a rare rose from the three hundred foot high canopy of the Venezuelan rain forest. Painter at first refuses to concede that chemicals, especially those he deals with in perfume manufacture, are dangerous to human health. As evidence of the global threat mounts, he becomes a guardian of planet earth. (Retail price: $14.95, B&N: $10.46)

Promise of N-Methyl-D-Aspartate Receptor Antagonists in Fibromyalgia Dept. Rehab. Med., Faculty of Health Sciences, Linkoping Univ., Pain Clinic, Univ. Hosp., Linkoping S-581 85, Sweden COURTESY: Co-Cure

There is strong evidence that intravenous administration of ketamine following a standardized protocol could be used as a diagnostic test for a central sensitization in the central nervous system in patients with FM. The combination of a weak opiod and an NMDA-receptor antagonist with few side effects is presently a promise for treatment of pain in a subgroup of patients with FM. Response to intravenously administered ketamine may help select patients for this treatment modality.

Ed’s Note: 99% of CFIDS/MCS cases have Neuropsychiatric Phenomenon.  cognitive disturbance, processing speed, short-term memory, auditory-sensory info overload, word-searching, multi-tasking problems, spatial disorganization. Sound familiar?

Special Thoughts to Everyone from Peggy Trojano:

"I received this today from our daughter Julia. . . . She puts up with my illness & the difficulties it causes ‘AND’ we work together on the "MCS" Beacon of Hope Foundation.

May you find serenity and tranquility in a world you may not always understand.

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with optimism and courage.

May a kind word, a reassuring touch, a warm smile, be yours every day of your life and may you give these gifts as well as receive them.

http://www.ncchem.com/mcsbeacon 

http://www.PetitionOnline.com/31O32/petition.html

Physician Group Backs New NIH Chelation Therapy Study for Heart Disease .. .a $30 million federal study to determine the safety and efficacy of chelation therapy in individuals with heart disease... The new five-year clinical trial will involve over 2,300 patients at more than 100 research sites across the country.... The therapy is designed to eliminate toxic metals, especially mercury, from tissues. A manmade amino acid called EDTA intravenously enters the patient’s blood and binds with the toxic metals, which are eliminated through the kidneys. To enroll in the NIH-funded study, patients must be 50 or older, have had a heart attack more than 3 months prior to evaluation, don’t smoke, haven’t undergone an angioplasty or bypass surgery and have had chelation therapy before. Prospective participants may obtain more information on the study and qualifications by contacting the ACAM web site at http://www.acam.org

Some Insect Repellants May Damage Brain Research:

Prolonged Exposure Killed Brain Cells in Rats

A Duke University Medical Center pharmacologist warns people to be cautious when using the insecticide DEET after his animal studies last year found the chemical causes brain cell death and behavioral changes in rats after frequent and prolonged use.