Brainstorms
The
Newsletter of the Greensboro
CFS/FMS/MCS Support Group
- March/April, 1999
- internet edition
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Brainstorms
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UPCOMING MEETINGS
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Trinity Group First Thursday of month at 1:00 pm, Trinity Methodist Church, Trinity
Rockingham County Group Third Thursday of month at 7:00 pm, Morehead Hospital, Eden
Burlington Group . . . . . . Contact Number: Myra Jackson (336) 229-7818
Lexington Group Contact Person: Donna Hall, RN (336) 224-0156
UPDATE! Dr. Charles Lapp leads Q&A Sessions at the Winston Salem Support Group (336-788-4223) on May 13, and at the Greensboro CFS Support Group on June 14. Begin to write your question up now!
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Because both CFS, FMS, MCS, GWS and Post-Polio Syndrome have overlapping symptoms, Brainstorms addresses them all as of concern to each of us. --------
Please, no perfumes, colognes, etc. at meetings, as many members are very sensitive to odors and chemicals. Thank you for your consideration.
Safe-Arbor Web Site and CHAT ROOM founded by committee member, Mary Pretlow, is located at http://www.ncchem.com/safe-arbor
Focus: support the Christian community in prayer for CFS/FMS/MCS/Porphyria sufferers and related issues, but open to all.
Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Injury Network Website http://www.ncchem.com , and updated address for member,
CHEMICAL-FREE LIVING TIPS
by Earle Phillips
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Try offering roaches a special diet. I understand they enjoy it. Sugar and baking soda mixed 50-50. They go to the sugar and eat the baking soda at the same time. The baking soda fizzes in the roaches' stomachs and without any poison will kill them. I think that Diatomaceous also works on roaches and other insects. This is something like a glass powder that will injure their insides and kill them. <Caution - be careful not to breathe Diatomaceous>!
For all clothing in your family, switch to perfume- and dye-free laundry detergent and do not use fabric softener. You also need to use the safest household cleaning products you can find. A source for safe products can be found at Dr. Lieberman's Web site http://www.coem.com/household.htm#household!
You may consider a cracked window for fresh air even in the winter. Whenever possible, open the windows to let the house air out.!
One of the most respected environmental doctors for children is Dr. Dorris Rapp (Buffalo, NY), author of "Is This Your Child?" and other books. http://www.drrapp.comMAKING OUR CASE
CFS/FMS/MCS should not be defined as a "wastebasket diagnosis", depression, or "all in your head." We suggest that perhaps "primary depression" is the wastebasket diagnosis of the 90's, and that perhaps in many cases that perception is "in the diagnostician's head?" Cancer patients often have reactive depression due to the effects of their disease, but that, by no stretch of the imagination, is the illness itself.
HOW DO GENDER ISSUES AFFECT THE MEDICAL TREATMENT OF PATIENTS?
Phone Interview with Melinda Vadas
Melinda is a disabled CFS patient. Formerly Assistant Professor of Philosophy, Winston-Salem State University and Visiting Lecturer in Philosophy at Guilford College, she graduated with her PhD. in Philosophy, from the University of Miami, and currently is Physician and Patient Liaison for the Greensboro CFS Support Group.
In CFS, as in other autoimmune diseases, patients are 2/3 to 3/4 women. Medical research is done primarily on men due to fear of "hormonal factors" influencing accuracy of results. Thus, in addition to the basic nature of new and emerging illnesses (CDC classifies CFS and Priority One on this list) encountering lack of understanding in the medical profession, research on these primarily "female" illnesses is woefully lacking. Compare treatment of CFS patients with that of MS before research found a marker (another primarily female disease) patients in early days of research, being called "fakers" and "hysteria."
As is typical with many diseases primarily affecting women, the tendency of the masculine-dominated medical field is to dismiss CFS as some form of "hysteria." Dismissal delays research, treatment, and carries over into the doctor/patient relationship. Already a hierarchal relationship, the physician more often than not, becomes ever more condescending and disrespecting of the patient (female). To be a woman patient is to be a victim twice over.
Women in our society typically are not allowed to set those goals for themselves that would train them for positions of power and great authority in great numbers. Women affected by CFS, therefore, are not the movers and shakers of our society in general. As long as the disease is well below the critical mass in those positions of power and women remain at the level of tokenism there, or affecting those in positions of power in a great way, research and answers and medical respect will continue to be delayed for these patients. There absence isn't really missed in business, government, etc.
Another sad reality is that these "token" women often fit the adage that women with power become men. They bind to the same male values. (The American Women's Medical Association does not even have a listing for CFS on its "Women's Health Issues" website -- Editor's Note). It is interesting that breast cancer is the number one "women's health issue" being promoted. Highly enlightening is the fact that breasts matter to men; it disfigures what many men see as their "playmates" instead of an equal relationship. Many men simply don't see their position of privilege, dominance and hierarchy as an issue. So from medical school into the medical establishment and elsewhere, women are at an inherent disadvantage. Women with CFS have a double whammy. And until women as women with their own unique gifts and values have a say in things (not ruling over men, but on equal footing with equal respect) we and our diseases won't count for much.
"All About Chronic Fatigue Syndrome, and Facilitating Physician Awareness"
Excerpts from UNC English 12 Gender/Health Issues Pamphlet by Christina Auten
Women seem to be regarded as having more cases of depression than men, so physicians assume that CFIDS is a manifestation of depression or hypochondria. When a woman goes to a doctor with CFIDS symptoms and is laughed at, insulted, or told "it's all in her head," it's easy to recognize that gender bias is a factor. This bias is further compounded by the fact that the majority of doctors are men, and a lack of knowledge resulting from the majority of medical research having been done on male study subjects. Another example of women being treated with indifference in medicine is that, years before the causes of two other primarily female diseases, lupus and multiple sclerosis, were discovered and diagnostic markers found, women patients were suffering with them. However, since doctors didn't know the cause, these women were told they were hypochondriacs, even though their complaints and concerns ended up proving valid.
Dr. Mary O'Brien, author of "Chronic Fatigue Syndrome" who has recovered from CFIDS, said in our telephone interview that women are even treated more unfavorably than men when they enter the workforce as physicians. All of these factors combine to negatively affect patient care in this primarily female disease. Dr. O'Brien advises that several approaches should be used by females suffering with CFIDS to get their doctors and peers to believe them. "Elucidate symptoms and be specific to doctors, don't be overdramatic/melodramatic. You should document when your symptoms start, when they are most severe, under which circumstances do they appear, and when you felt the decline in your ability. Almost like presenting your case to a judge, you want to be as factual and precise as possible without letting your emotions get involved. If you follow these steps, you will be on your way to being better understood by your doctors and peers."
Excerpt: Max Meeks, WMFR radio interview with Dr. Al Hawks (May, 1996), High Point, NC.
Background: Primary care in area of family medicine; High Point Family Medicine, Cornerstone Medical Group Max Meeks:
Q: Dr. Hawks, why are women treated differently by the medical establishment, especially women with CFS?
A: (Synopsis of answer) Unfortunately, Max, that seems to be the case. If a woman and a man present to the physician with a nonspecific collection of symptoms and ill-defined (by research) disease pattern, the woman is more likely to be dismissed as a hysteric, somatic, malingerer, or hypochondriac while the male patient is more likely to be told that he has an undiagnosed illness, suggestions are made for symptomatic treatment and he is treated with compassion, and a continuing search for answers.
Senator Daniel Patrick Moynihan calls this "blaming the victim." As we focus on the gender issue, however, let us not neglect the suffering of men with this "primarily female disease" and the particular social bias and repercussions they must deal with in addition to being afflicted with CFIDS.
CFS CHUCKLES
- Margaret Auten mauten5599@juno.com
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| Disclaimer: This newsletter serves as a clearing house for information concerning CFIDS and/or FMS. Some of the information contained herein is intended to help patients and their physicians to make informed decisions about their health. However, the Greensboro CFS/FMS Support group does not dispense medical advice or endorse any specific medical hypothesis or product. |