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SEPTEMBER/OCTOBER 2001
Trinity Group 1st Thurs. of month at 1:00 pm, Trinity UMC, Trinity Rockingham County 3rd Thurs. of month 7:00 pm, Morehead Hospital, Eden Burlington Group 1st Mon. of month, Faith UMC: Myra Jackson (336) 229-7818 MAIN MEETING DIRECTIONS ... Moses Cone's Adult Health Education Center (AHEC) is located at the hospital. Turn off Wendover Ave. in Greensboro onto Church St., then left onto Northwood, then right at the next light, and the Parking Deck will be on the right. The AHEC entrance is located beside the parking deck at the top of the circular drive. Because CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndrome or Myalgic Encephalopathy), FMS (Fibromyalgia), MCS (Multiple Chemical Sensitivities), GWI (Gulf War Illness), Porphyria and Post-Polio Syndrome (PPS) have overlapping symptoms, Brainstorms addresses them all as of concern to each of us. *****PLEASE NOTE **** Please, no perfumes, colognes, etc. at meeting, as many members are very sensitive to odors and chemicals. It worsen their symptoms. Washing clothing in perfume-free detergents is also helpful. Thank you very much for your consideration. **** DISCLAIMER **** .This newsletter serves as a clearing house for information concerning CFIDS/ME, MCS and/or FMS. Some information contained herein is intended to help patients and their physicians make informed decisions about their health. However, the Greensboro CFS/FMS/MCS Support Group does not dispense medical advice or endorse any specific medical hypothesis or product. For any BRAINSTORMS subscription, renewal, advertising or mailing questions/difficulties, please contact 336-476-8933
CHAT ROOM founded by committee member, Mary Pretlow, is located at http://ncchem.com/safe-arbor . Focus: support the Christian community in prayer for CFS/FMS/MCS sufferers/related issues, open to all. Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website ( http://ncchem.com ), National CFIDS Foundation ( www.ncf-net.com ), CFIDS Association of America ( www.cfids.org ) and the CDC ( www.cdc.gov ). CFIDS/FMS/Environmental Illness Share, Care and Prayer, Inc. 1-972-964-8333 (Wed.8-4, Fri.8-11, Sat.10-11) or email eianswerline@sharecareprayer.org . In Our World Ophthalmoplegic Migraine May Represent Recurrent Demyelinating Neuropathy ... On June 29 Reuters Health reports on a limited investigation by Drs. Zagami and Lance, Univ. New South Wales, Sydney, Australia. Patients with recurring optical migraines (one triggered following an autoimmune reaction to vaccine) were examined by MRI and CT findings. Researchers highlight that "findings are consistent with intraneural oedema as reported in some experimental demyelinating neuropathies and in chronic inflammatory demyelinating polyneuropathy," basically resulting from inflammatory processes "affecting the oculomotor nerve, in turn irritating trigeminal sensory fibers causing migraine-like headaches.". This is an interesting finding in light of the upregulation of the immune system, low-grade fever, and migraine present in many CFIDS patients. Glucosamine for migraine prophylaxis? In a Medline abstract from Med Hypothesis 2000;55:195-198 by AL Russell, MF Mcarty, authors undertook a small trial of daily glucosamine supplementation for relief of migraines following their observation of a patient being treated w/this supplement for osteoarthritis having cessation of migraines. They postulate reduction in frequency and intensity of headaches may be "due to boosting of mast cell heparin synthesis - perhaps correcting a functional heparin deficiency - thereby preventing ... neurogenic inflammation that mediates pain in vascular headache." Clinical and Immunologic Effects of Autologous Lymph Node Cell Transplant in CFS, Journal of CFS, Vol 8(1)2001, pp.39-55. In this abstract, Dr. Nancy Klimas and others found experimental treatment of CFS patients "using lymph node extraction, e vivo lymph node cell expansion, followed by autologous cell reinfusion" had no adverse effects, but "significant improvements in clinical status is association with significant decrease in Th2-type cytokine production."
- Courtesy: Co-Cure.org Lobbying efforts pay off: AOA (American Osteopathic Association) shares news of Congress HR1836 tax code changes which all interest from student loans is tax-deductible for the lifetime of the loan if single AGI is $40,000 or less, couples $60,000 or less. This info might be helpful financially if disability becomes a factor. Also, you might check to see if you can be forgiven from loans in case of permanent disability. New Blue Cross of California HMO policy discontinues policy of rewarding its participating physicians for controlling medical cost, instead beginning a plan of rewarding physicians by bonuses for patient satisfaction. Sounds promising! To read article, www.latimes.com/features/health/la-0700blue.story Visit CFIDS/FMS SELF-HELP at http://home.flash.net/~brucpa/ten_keys.htm to explore "Ten Keys to Coping and Recovery." Four of them include combining acceptance and a fighting spirit, finding your limits, self-pacing, and nurturing self with schedule rests. An inexpensive course in this is available online. Phase II Data suggest implantable Sufentanil offers long-term pain control Initial data shows therapy offering significant relief from chronic pain while reducing side effects of standard opioids. http://neurology.medscape.com/39800.rhtml?srcmp=neur--070601 Delayed-type hypersensitivity and chronic fatigue syndrome: the usefulness of assessing T-cell activation by flow cytometry - preliminary study. Journal: Allerg Immunol (Paris) 2001 Apr;33(4):166-72, Authors Brunet JL, Liaudet AP, Later R, Peyranond D, cozon GJ, Infectious Disease Dept. Hopital de la Croix-Rousse-69317 Lyon, France CFS or benign myalgic encephalomyelitis has been extensively described and investigated. Although numerous immunological abnormalities have been linked with the syndrome, none have been found to be specific. This article describes the detection of delayed-type hypersensitive responses to certain common environmental antigens in almost 5% of patients with CFS. Medicare endorsing discount drug programs Enrollment beginning as early as Nov. 1 in the Medicare Rx Discount Card Program, providing Medicare recipients with drug discounts, as temporary fix while Congress/Administration are working to add a drug benefit to the Medicare Program. The Rx temporary program provides comparison drug prices with various existing drug discount programs, and can enroll in of these Medicare-endorsed programs for small one time fee of approximately $25. Beginning October 1, 1-800-MEDICARE will be operational 24/7, and online at www.medicare.gov Veterans Benefits Act of 2001 in process The subcommittee draft bill would expand the definition of undiagnosed illnesses for Persian Gulf War vets to include FMS, CFS, chronic multisymptom illnesses, and any other illness that cannot be defined. (*Eds. note- this seems to allow for MCS as well) - Courtesy Co-Cure.org Possibility of Weather Triggering 50% of Migraine Headaches Reuters Health news coming out of 10th Congress of International Heache Society, New York, NY implicates weather as a migraine trigger. This premise is based on work of New England Headache, Stamford, CT researchers, and co-investigator, Dr. P Birgeneau Prince. Most prevalent factors include combination of low humidity/cold weather, and barometric pressure. Suggestions shared include keeping headache calendar to pinpoint trigger weather, then taking appropriate preventative medications in anticipation of weather change. Adult Migraine Disability Test, mentioned on Medscape's Neurology newsletter would be helpful for physicians to use in disability documentation for CFIDS patients suffering with migraines. It is called the MIDAS (Migraine Disability Assessment Scale). Ask your doctor about this. MS Effects on driving ability are noted in MS Connection, 7/2001 article. www.nmss.org The study highlights cognitive factors, field-of-vision tests, and strengths and weaknesses of MS drivers. With CFIDS if your cognitive, neurological abilities affect driving, here are a couple of suggestions patients in the Greensboro CFIDS Group share as beneficial to them: 1) Limit your driving on cognitively "bad" days. 2) Print out to and from directions using online free service such as www.mapsonus.com to avoid disorientation. 3) Wear sunglasses if light is bothering your perception. 4) If you have photopsia, sometimes night driving might be a better choice. 5) Have a "back seat driver" or "team-driving" buddy to double check your driving moves, such as changing lanes, or upcoming stop lights. 6) Get a "designated driver!" 7) Don't follow closely if you have spatial disorientation, or delayed reaction times as "object may be closer than you think." 8) Choose simple routes, and close locations to minimize time on the road. 9) Use cruise control if you have it to minimize amount of things you are having to do at once. We have real difficulties with "one-track minds." 10) Avoid driving straight drive if muscle weakness and strength is a problem. :) FYI: For Your Information Dave and Kristina Abbott, New Tribes Missionaries, share her experience with FMS on their webpage at: http://www.ntm.org.ph/dave_abbott/sides/fibromyalgia.htm FMS Overview What is fibromyalgia? It is a type of muscular rheumatism. It causes a feeling of pain in the muscles throughout the body, similar to having the flu. More than 90% of people with FMS also experience fatigue. The accompanying fatigue is often referred to as Chronic Fatigue Syndrome (CFS) It does not get progressively worse over time and does not damage muscles and bones. On the other hand, there is currently no cure and it does not go away. What causes it? No one knows for sure. How is it diagnosed? People with FMS have 18 specific areas of pain called "tender points." They exist in all four quadrants of the body. A person with FMS has severe pain when at least 11 of these points are pressed. These "tender points" must persist for at least 3 months. What other symptoms are there?
Letter to the Editor to Archives of Internal Medicine, Vol. 161, No 12, 6/25/2001 postulate links between CFS, adrenal insufficiency and decreased exercise capacity. They compare observations of deBecker et all in CFS patients with virtually identical responses in bicycle ergometer tests done on patients with chronic corticoadrenal insufficiency. CFS patient Riccardo Baschetti, MD, Padua Italy writes that in his case and others that CFS shares 39 features with Addison's disease, "including all the physical and neuropsychological symptoms listed in original and revised CFS criteria, as well as many other abnormalities." He points out that they both share persistent fatigue, debilitation after exercise, reduction in cardiac dimensions, increased heart rate at rest, hypocortisolism, impaired adrenal cortical function, reduced adrenal gland size, and antibodies against the adrenal gland. He also points out the increased sensitivity to chemical exposures found in CFS and Addison's disease. Nocturnal awakenings, decrease in sleep continuity and sleep fragmentation is observed, according to Baschetti, in CFS and Addison's patients who are not on supplemental hydrocortisone. He feels that as a result of similar symptoms patients should be supplemented with hydrocortisone and fludrocortisone acetate. -- Source: Co-Cure and AMA Questions for the docs? Management of autonomic hyperreflexia with magnesium sulfate during labor i a woman with spinal cord injury. American Journal of Obstetrics and Gynecology, 8/200 v183 i2 p492(2) Question for docs: Would IM magnesium injections assist CFIDS patients with this symptom? Sympathetic cardioneuropathy in dysautonomias. NEJM, 3/97 v336n10p696(7). Abstract states that researchers used radiolabelled intravenous fluorodopamine and PET scanning in patients with various dysautonomias to analyze the flow of the chemical through the heart. Since symptoms and treatment vary depending on involvement of sympathetic or parasympathetics systems, author David S. Goldstein, et al suggest that this technique classifies patients better than older systems. Autonomic disorders and their recognition, Christopher Mathias, NEJM, 3/6/97 v336n10p721(4). Abstract tells us that body temperature, blood pressure (ie. orthostatic hypotension, erectile dysfunction, visual disorders, etc.) and many other vital processes are controlled by ANS (autonomic nervous system). Question for docs: Would this diagnostic pinpointing work in CFIDS with concomitant NMH, and other dysautomic symptoms? - Source: www.galenet.com New Polio Symptoms Arise Long After Initial Infection according to Dr. Paul Donohue, Health column for the High Point Enterprise. He describes weakened muscles, fatigue, pain, stiff muscles, and aching joints in post-polio patients, but says these symptoms aren't related to the original virus, ad puts a caveat on exercise as a method for maintaining muscle strength. Warning against the patient exercising to point of exhaustion, he recommends frequent rest breaks to alleviate pain and worsening of muscle weakness. For more info, he suggests contacting www.post-polio.org 314-534-0475. Mayo Clinic neurologist, Steven Vernino, MD, PhD is principal author of a study published in NEJM, 9/21/2000 suggesting that "one form of a serious neurologic disorder affecting the autonomic nerves is due to abnormal antibodies in a patient's blood." They have developed "an antibody test that will help physicians evaluate patients with autonomic failure" Source: www.galenet.com and Immunotherapy Weekly via NewsRx.com CFIDS Chuckles "I live in my own little world, but it's OK, they know me here." "I don't do drugs anymore 'cause I find I get the same effect just by standing up really fast." "Dyslexia means never having to say that you're yrros." "I see your IQ test results were negative." "When I was born, I was so surprised I couldn't talk for a year and a half." "Everyday I beat my own previous record for number of consecutive days I've stayed alive." "Middle age is when you choose your cereal for the fiber, not the toy." "The next time you feel like complaining, remember: Your garbage disposal probably eats better than 30% of the people in this world." - Submitted by Jupy Stout "Why does my nozzle not fit?" Question from patient, Tom Castle, upon trying to fill up his gas tank with regular gas, using the diesel pump. News & Notes If you are a Medicare A & B patient and need to see a chiropractic physician for your treatment, they will usually require you to have a set of x-rays. Medicare reimbursement, however, may be a problem. The x-rays will probably not be covered, unless you request your primary care physician to order the appropriate set of x-rays taken at a local imaging center. Then your chiropractor may request a copy of them be mailed or faxed to their office. These should be covered since they are ordered by an MD or DO. With many chiropractors, basic Medicare A & B will pay 80% of manipulation after your deductible is met, but if the doctor doesn't accept assignment, you will pay out of pocket, and Medicare will mail reimbursement check directly to you. www.aoa-net.org for a complete directory of all U.S. osteopathic physicians. Osteopathic physicians are medical doctors with all of their privileges, but also work with the musculoskeletal integration of the body that is so painful in fibromyalgia. Locally, Dr. John McKinney, National Highway, Thomasville, NC, 885-7311 is very gifted with osteopathic manipulation, and after Medicare reimbursement fees are usually around $17 per visit. This is less expensive than massage therapy. Keeping records - Your medical records are your property, and you as the patient have a right to request a copy in writing by signing a release form. These are very helpful to have with CFIDS, perhaps chronologically in a 3-ring binder, in order to have an organized source for the myriad of things you will need them for such copies to each of your physician team for their records (ie. specialist, neurologist, primary care, etc.) , documentation for disability insurance, disability accomodation, insurance records, etc. For an introductory letter to nurses and a copy of "School Nurse News" article on pediatric CFS by Dr. David Bell for your local school nurses, send a SASE to CFIDS Association of America, ATTN: School Nurse Info, PO Box 220398, Charlotte, NC 28222-0398, download free off internet at www.cfids.org/youth/nurses/index.html or email tlupton@cfids.org Dr. Richard Bruno is requesting those with CFS and FM who had childhood illness similar to polio, paralytic or non-paralytic, to fill out a survey by emailing him at harvestctr@aol.com , or mail at 151 Prospect Ave., Box 17A, Hackensack, NJ 07601. It worked for me ... Tri-Salts used to lower high acid buildup that seems to have something to do with brain fog as well in MCS and some CFS patients. After chemical exposure, blood acid levels can be off the scales for days following. * Courtesy CSN, PO Box 220398, Charlotte, NC 28222, csn@cfids.org , 704-6364-0466 Purpose of ADA ... is not to give disabled individuals special treatment that gives them an advantage over healthy workers, but rather to level the playing field for anyone with a handicap. Way to go to golfer, Casey Martin. The Supreme Court decided that accommodation does not constitute "unfair advantage." Toxic docs' offices ... if your doctor's office has flourescent lights which bother you, either wear sunglasses, or request them turn off overhead lighting in exam rooms and use any kind of regular lamp in the room. Also in new offices, if the paint and formaldehyde outgassing from new carpet/furniture is bothering you, simply go outside and sit, after informing the receptionist you are chemically-sensitive and could she please call you when the doctor is ready. Or you can request that they allow you to lay down early in an unused treatment room with a blanket if cold and hypotensive, explaining temperature sensitivity and blood pressure problems. Solution to ameliorate some fatigue ... Get an apartment or smaller house, equating lesser responsibilities, more conducive to rest, turning over as many cleaning responsibilities as possible to someone else, until your illness improves. Ask your doctor to recommend this, if it will carry more weight/understanding with your family members. The American Occupational Therapy Association, Inc. on its www.aota.org website, gives suggestions for managing daily life when you have CFS. They include keeping a diary of activities performed, time with each task, and times most fatigued. They advise trying to correlate this log looking for patterns of difficulty and actions you can delete or change from your schedule. Suggestions include placing a laundry basket at the top and bottom of stairs to collect items for fewer trips. They suggest having an occupational therapist perform a review of your daily routine, and then advise you on the most energy efficient process to carry them out. You may also contact them at The American Occupational Therapy Association, Inc., 4720 Montgomery Lane, PO Box 31220, Bethesda, MD 20824-1220. HEALTH PROFESSIONALS LIST ... Dr. Harry Padgett of Agape-Onoma Center, performs extended battery of memory testing documentation at economical cost. This may assist in proving your case in SSDI, ADA/educational accommodation and/or Workmen's Comp/OSHA. 1212 School St., Wilkesboro, NC 1-336-667-5675. Weschler, Wyatt, WAISIII and WMS III for educational accommodation testing ($250). P-T Employment Ideas - Mystery Shopper http://www.secretshopper.com or phone 1-800-781-7467. The basic premise is they employ independent contractors who will go through online training and go to various establishments, such as restaurants, motels, etc. in their local area as they are able, to be paid random, "mystery" testers of the merchant's products, ie. food, etc. and responsible to fill out an evaluation form on the visit. Marvina has participated in this program and was pleased. - Submitted by Marvina Powers A good new novel that is out, which involves MCS! "The Empty Chair" by Jeffrey Deaver. "Looking for Advice" is a new website by MaryAnne Schmittle, RN, MSW in training as a Nurse Practitioner. Topic: How to live and deal with pain, illness and disability, and how to take your life back based on her own experiences with 15 years of chronic illness. Of her site she writes: "Make this a place for everyone to find a way to take back our power, a way to take back our lives. For us to no longer be a victim of our bodies but to unify our minds, our bodies and our souls to work for a common goal: To find our own unique selves so that we can live all that life has to offer and to take all the gifts that are ours if we just know how." www.lookingforadvice.org Chronic Pain and other medical resources www2.rpa.net/~lrandall/index.htm l Courtesy: Co-cure.org It Works for Me! Doesn't for Me! FMS patient, LaVon Sigmon, Charlotte, NC shares that use of Duragesic Patches have improved quality of life. Tom Castle, FMS patient had a negative reaction to the patches.
U.S. Dept. of Education National Institute on Disability and Rehabilitation Research (NIDRR) is inviting FY2002 grant award applications with the following request excerpts: "The secretary is particularly interested in applications that address one of the following invitational priorities ...(d) projects that enhance functioning of people with newly recognized disabilities or conditions such as multiple chemical sensitivity (MCS), chronic fatigue immune deficiency syndrome (CFIDS), and fibromyalgia.
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