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July/August, 2002 DOMESTIC ABUSE INVOLVING PEOPLE WITH DISABILITIES
In Our World "If I just waited for a cure, I wouldn't really be alive. I've remodeled my life...so that I can achieve something with what I have." - Laura Hillenbrand, who despite CFS wrote Seabiscuit, An American Legend. Sick and Tired Patients in Uproar A row has erupted between doctors and patients over the diagnosis and treatment of the debilitating illness chronic fatigue syndrome (CFS). The stand-off concerns new guidelines for doctors that patient groups say trivialize the condition, blame sufferers for their illness and promote harmful therapies. They have unanimously rejected the long-awaited document and demanded it be withdrawn. They have warned that the Royal Australasian College of Physicians, which developed the guidelines, and the Medical Journal of Australia, which plans to publish them on Sunday, could be held legally liable if patients are made sicker as a result of doctors following them. Simon Molesworth, the president of the ME/Chronic Fatigue Syndrome Association of Australia, said the recommendations presented the syndrome, which is estimated to affect up to 150,000 Australians, as primarily a psychological illness and characterized patients as malingerers. They under-emphasized emerging research pointing to biological causes, and included therapies that could be dangerous for people who were very sick. So-called "graded exercise," in which patients are instructed to perform an increasing volume of activity over time, could have serious consequences for the seriously ill, said Mr. Molesworth, whose organization represents patient support groups in all states and territories, which together include 15,000 members. As well, there was no evidence that a regime of strict control of sleep was effective, and there were insufficient scientific grounds to recommend anti-depressants, Mr. Molesworth said. Both therapies are included in the document. "There will be many instances of people who will not be appropriately treated because of these guidelines," Mr. Molesworth said. Treatment of the syndrome was controversial but the guidelines were biased and drew only "from one side of the debate...it's extraordinary that a blind eye can be turned to the other side of the research." One sufferer, "Alison" - who does not wish to be identified - had been sick for a decade and undergone a series of pathology tests that have been inconclusive. Her symptoms have included constant vomiting, perpetual pain, and focal dystonia, a collapse of the muscle of one eyelid that gives it a permanent droop. Five years ago her condition worsened. At one stage she had to be fed using a tube for 10 weeks. It was then that the 24-year-old Sydney woman was asked what she said were intrusive questions about her private life. "I was questioned inappropriately about family relationships," Alison said. Ordinarily she might have objected but, "It's so hard to stand up for your rights when you are debilitated." Alison, who had to postpone plans to become a veterinary nurse, says she is feeling tentatively optimistic now. With a more sympathetic medical regime, which includes vitamin injections, she is no longer housebound. What she wants from doctors is more open-mindedness and lateral thinking. "We need to be supported instead of feeling constantly under attack." The chief author of the guidelines, Robert Loblay, an immunologist at the University of Sydney and Royal Prince Alfred Hospital, said the six-year preparation of the document had involved extensive consultation with patient groups, and many of their suggestions had been incorporated. "We've made changes, including very recent changes, and we feel we've addressed the substantive issues," Dr. Loblay said. Sections on the treatment of children and adolescents with the syndrome and for the most severely ill patients had been included after patient groups lobbied for them. "Our job has been to evaluate the evidence as best we can and tread a middle path," Dr. Loblay said. "We're seeking to address the practitioners out in the community who see patients from time to time and don't know what to think, and to give them enough information to use in their day-to-day practice.: The president of the college, Richard Larkins, said it supported the guidelines, which were "helpful and balanced" but should be viewed as "a living document" because scientific knowledge about the syndrome was incomplete - particularly about its causes. "Should new evidence emerge they would be superseded," Dr. Larkins said. Mr. Molesworth asked the editor of the Medical Journal of Australia, Dr. Martin Van Der Weyden, to withdraw the guidelines from publication, but he declined. He wrote to Mr. Molesworth that "to take on the role of a censor and ask a journal to desist from publication is unprecedented in scientific and clinical publishing in Australia." (c) 2002 Sydney Morning Herald. April 29, 2002, Julia Robotham, Medical Writer. http://www.smh.com.au/articles/2002/04/28/1019441325577.html [This is the long version] - contributed by CO-CURE. Safe Place For those of you in Florida who may have nowhere safe to go, I just learned of a branch of a community that might be a safe place if you want to check it out -- They are a Christian community that follows Jewish customs and are very enviro conscious. The one in Florida has an organic farm. They don't isolate from other communities but live as a community within a community if that makes sense - they welcome visitors and from what I understand and have experienced, they provide a place to stay for anyone who wants to observe their lifestyle. My friend is taking her daughter to the one in Colorado Springs and is visiting them for a while right now. Here's a link if anyone's interested. http://www.twelvetribes.com/Jog%20Run%20Farm.htm - contributed by Susan Wells Vaughan. From Earle This is a new organization to me: "The National Council on Disability is an advisory council to the President of the United States on all matters relative to people with disabilities. Most people with disabilities, when asked, will draw a blank when asked about the National Council on Disability. People with disabilities should know about the National Council on Disability and the excellent work that they do on behalf of Americans with disabilities." http://www.ncil.org/ http://www.ncil.org/rehab03.htm News & Notes
Inexplicably ill on a sporadic basis? If you have found yourself becoming inexplicably ill on a sporadic basis, it might be wise to investigate the possibility of MCS. You may very well save yourself time, frustration, and money by first ruling out the potential of a chemical reactivity. For more information, I suggest you visit this respected Web site on chemical sensitivities: www.fpinva.org (c) Rebecca Ephraim, Registered Dietitian, Certified Clinical Nutritionist. Winston-Salem CFS, FM, Myofascial Pain Support Group: www.cfsfms.freeservers.com 336-723-7624 "Chemical Brain Injury," book by Dr. Kaye Kilburn. http://www-hsc.usc.edu/~kilburn/ 1st site gives a lot on his background while 2nd is his company. - contributed by Elizabeth Glickman A "Book" on Health Update I continue to crash over and over, but my recovery times are shorter. I am pleased with this progress. My migraines are not as bad since I changed to the Vivelle patch instead of Estrace....actually, my concentration has improved with the hormone change med. My blood tests proved my estrogen and testosterone were at minimal level. I could not take testosterone...I tried and my face looked like undiscovered planets were growing on my chin (blemishes)!!!! The doctor (female) stated that my cognitive difficulties may be partially menopause. I have deleted so many meds while going to her, so you can imagine the withdrawal roller. I think it has been worth it. Dr. Lapp suggested Celexa and she agreed and wow. 1/2 tab each a.m. This might contribute to brain improvement. Or who knows...I had a major relapse in January. All I can say: I rarely take pain medicine anymore and my headaches have decreased by 85%. My internist has changed my heart med to a blood pressure control type and I feel better for that, too. Just thought with all the hype on peri-menopausal and menopausal symptoms in all the literature, that some of our members might need a tune-up on the hormones. Worth a try. The doc has to draw blood work though and really assess the level. The key is to keep it as level as possible over a 24-hour period. Should help with sleep, too. Before I went to the woman doctor, my gyn was just guessing in the wind with what "normal" women experienced...needless to say...most of us are not normal. - Written by Jo Rankin, RN HELP HELP HELP! PLEASE SEND Brainstorms/Membership DUES TO MARVINA POWERS, 107 WALL AVE., THOMASVILLE, NC 27360. Thanks! Multiple Exposures Health risks may be increased and complicated if one is exposed to two or more chemicals simultaneously. In this case, the effects may be either additive or synergistic. Additive effects are those in which the combined effect of two or more chemicals is equivalent to the sum of the effects of each agent on the body. This occurs most commonly when the chemicals affect the body in similar ways. An example would e inhaling glue solvents and drinking alcohol (or even taking Tylenol or other drugs while inhaling a toxicant - Susan). Synergistic effects occur when exposure to two or more chemicals products effects greater than the sum of the effects of each agent.... Total Body Burden. An additional factor in assessing health risks is the total body burden of a given chemical or material. This is the cumulative effect on the body of all the different exposures to that chemical from various sources. If the total body burden of a substance exceeds the body's adaptive capacity to eliminate or detoxify the material, the result may be injury, disease or even death. An example of this type of cumulative hazard is that of lead, to which we are exposed from numerous sources, and which is used in several photographic toners..... High Risk Individuals (this is the part most chemical reps leave out or mds leave out as well - Susan). Individual susceptibility is another important factor in determining risk. Certain individuals, because of biological or other physical factors, tend to be more susceptible to the harmful effects of chemicals... At greater risk are fetuses of exposed mothers and infants who are breast-feeding. Even minute amounts of some chemicals transmitted through the placenta or ingested with breast milk can cause harm... Other high risk groups include immune-suppressed individuals and people with chronic diseases, especially diseases of the heart, lungs, kidneys and liver; the elderly; and allergic individuals, particularly asthmatics. In addition, many people have a high individual susceptibility to chemical allergies because of genetic factors or as a result of massive or prolonged exposures to chemicals that cause allergic sensitization. Formaldehyde, turpentine and para-phenylenediamine developers are examples of chemicals that can cause allergic sensitization in some individuals. Others who may be at high risk are those who are under increased physical or emotional stress and, as a result, may be temporarily less resistant to chemical exposures." In chapter two, the author discusses the laws regulating these photo chemicals and points out, "Schools and universities that teach photography should be providing leadership in compliance with these laws. Instead, some of these institutions are operating in violation or in ignorance of these regulations themselves. Even sadder, they continue to send students out into the world who are ignorant of the laws designed to protect on the job and which regulate their use and disposal of chemicals. And so, the cycle of non-compliance continues. To break this cycle, there is a new law which mandates formal health and safety training for all employees, including teachers, who may use or be exposed to potentially toxic materials (see The Right to Know). It is also imperative that schools transmit this training to their students or they risk legal actions for failing to meet their obligations to inform and protect their students." Excerpts from "OverExposure," 1990, purchased through Amazon Used Books. Gulf War Troops' Brains' 'Damaged" The Times, London, 6/20/02 Michael Evans, Defence Editor BRAIN scans on Gulf War veterans in the US who are suffering from debilitating diseases may have resolved why 130,000 US and British servicemen and women complain of mystery illnesses. Research discovered that disabled veterans of the 1991 war suffered chemical changes in their brains, similar to the onset of Parkinson's and Huntington's disease. The findings of the research, which have not yet been published, were revealed yesterday at the second day of a US congressional hearing into so-called Gulf War syndrome, being held in the Palace of Westminister. British veterans who were present looked shocked. After detailed medical examination of one battalion of 249 soldiers from the 700,000 US troops who were deployed to the Gulf, Robert Haley of the Southwestern Medical Centre at the University of Texas found that the brain cellular structure of the sick veterans had been damaged. Speaking in a committee room of the House of Lords, Dr. Haley said he had uncovered evidence of "chemical disturbance" in the brain. A similar study of British veterans by Goran Jamal, consultant physician at Imperial College School of Medicine, London University, which also revealed brain damage, had been ignored by the authorities, Dr. Haley said. His own research, he said, had also shown that Gulf War veterans were two to three times more likely to suffer from motor neurone disease than other people. The damage to the brain was likely to have been caused by the use of organophosphate pesticides to kill desert flies and lice at the American and British tented camps in Saudi Arabia; the anti-nerve gas tablets and vaccines given to frontline troops and inhalation of chemicals after the Americans bombed an Iraqui chemical weapons store. http://www.timesonline.uk/article/0,,2-332325,00.html "Despite its medical and legal necessity, visual acuity does not address the majority of aspects of visual function. Other procedures such as visual contrast sensitivity testing may be needed to full understand and explain a patient's complaints. - Karl Citek, DD, PhD, FAAO, http://www.visioncareproducts Interesting study/findings by Florida researcher, Nancy Klimas, on Procrit increasing red blood cells. "HOPE ... is an ability to work for something because it is good, not just because it stands a chance to succeed. It is not the conviction that something will turn out well, but the certainty that something makes sens, regardless of how it turns out. In short, I think that the deepest and more important form of hope, the only one that can keep us above water and urge us to good works, and the only true source of the breathtaking dimension of the human spirit and its efforts, is something we get, as it were, from 'elsewhere.'
- Vaclav Havel, 1986
A fella walked into a doctor's office and the receptionist asked him what he had. He said, "Shingles." So she took down his name, address, medical insurance number and told him to have a seat. Fifteen minutes later a nurse's aide came out and asked him what he had. He said, "Shingles." So she took down his height, weight, a complete medical history and told him to wait in the examining room. A half-hour later a nurse came in and asked him what he had. He said, "Shingles." So she gave him a blood test, a blood pressure test, an electrocardiogram, told him to take off all his clothes and wait for the doctor. An hour later the doctor came in and asked him what he had. He said, "Shingles." The doctor looked at him and asked, "Where?" The man replied, "Outside in the truck. Where do you want them?" News & Notes ADD THESE DOCS TO YOUR RECOMMENDED LIST!
Rowan Pain Management: acupuncture, alternative, narcotic, and traditional medical treatments with special care for those with chemical sensitivities. Patient reports say he is very caring and conce3rned about his patients, not just caring about getting his patients out of pain, but doing it.
Board certified in Family Practice, Holistic Medicine and Acupuncture. Truly helps his FMS/CFIDS patients, and is open as a caring, open-minded, collaborative primary care doctor to work with your specialist if necessary. National Center for Complementary and Alternative Medicine (NCCAM) announced on Tuesday the launch of its newly redesigned Web site, at http://nccam.nih.gov , which houses an array of information on complementary and alternative medicine (CAM practices and research. The site features not only a new architecture for easier navigation and access to information, but also new content and links. Anecdotal reports of MCS patients being helped with DMSA oral chelates.
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