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Brainstorms --- JULY/AUGUST 2000
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, no perfumes, colognes, etc. at any meeting, as many members are very sensitive to odors and chemicals which worsen their symptoms. Washing clothing in perfume-free detergents is also helpful to patients, and is a chemical sensitivity trigger often overlooked. Thank you very much for your consideration. A 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), CDC (www.cdc.org)
NEWS & NOTES The Journal for CFIDS recent issue had a study at an environmental clinic report that 90% of MCS new referrals also met the CFIDS criteria leading to the conclusion that MCS is likely an early stage CFIDS symptom for some. A second symptom Reynauds Syndrome (cold/temperature intolerance) is also likely to be an early stage CFIDS symptom. “Is anyone looking for a roomate? I am a n/s, female, with FM and chemical sensitivities who likes cats and dogs. Please contact 869-0991 and request your response be relayed to Tricia.” Happy Birthday, Aug 7: Fran Stanfield, Margaret Smithey (If you’d like to share your birthday with us, please email MHolt5599@juno.com or call 869-0991!) “The Brucellosis Triangle” by Donald W. Scott and William L.C. Scott. “The Journal of Degenerative Diseases.” March 2000, “Toward Recovery: Reversing the Syndrome” by Joe Foran. patients have to try to find out who can help victims of this illness and get them help before they have been sick for the six month period that is required to meet the definition. If we can get people good help in the early stages of the illness, then their chances for recovery are greatly improved. Info on Enada: Enada may be purchased at a discount at www.immunesupport.com/shop. For a limited time, the Enada clinical study at Georgetown University can be obtained at the website http://allergy.edoc.com This study was published in the Annals of Allergy, Asthma and Immunology, February 1999 issue. “The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” Dr. Byron Hyde’s book Two references to high blood pressure...pages 71-72 and page 376 state that if a person has “pre-existing mild hypertension” before becoming ill with ME/CFS the development of malignant hypertension can occur, sometimes with the appearance of carciniod syndrome. Carcinoid features tend not to continue, but the malignant hypertension when it occurs, tends to persist and to be poorly controllable. SURFIN’ THE WEB CFSFMExpermental@egroup.com: email to join this very active list on technical treatment and facts http://www.medicare.gov: HCFA Press Office (202) 690-6145 Improved Web Site Design Makes Medicare Information More Accessible Medicare has added new and expanded information about Medicare benefits, health plan options, etc. to its popular www.medicare.gov Website. The changes are part of a major redesign to make the Web site faster and easier to use. It iincludes A new site design that makes it easier to find, read and print online Information about Medicare, including information on health plan options; New information about the number of plan members who have disenrolled from their Medicare+Choice plans. There is an improved screen reader that allows people with visual disabilities to access the Internet. This tool allows users who have screen reader capabilities to “hear” the words on the screen. “These improvements to medicare.gov represent HCFA’s latest commitment to help consumers make more informed health care decisions,” said HCFA Administrator Nancy-Ann DeParle. “Older Americans, their friends and their families are tapping into the Web like never before.” The latest Medicare Current Beneficiary Survey showed that Internet access among people with Medicare who are 65 and older has skyrocketed from 6.8 percent in 1997 to 21.3 percent in 1999. In addition, industry figures on web use indicate that people over the age of 50 represent the largest and fastest growing population on the Internet. They are increasingly using computers and Internet searching for info on vital issues like health care. http://endfatigue.com (exhaustive resources by Dr. Jacob Teitelbaum. Link to forms to input info, and take his personal recommendations to your doctor. http://css.inform.dk/mycoplasma/myco.htm (websites on role of mycoplasma in CFS: submitted by Teresa Simmons) http://www.preventingharm.org/execsum.html http://personal.riverusers.com/~searcher/help/ada.html http://www.delphi.com/n/main.asp?webtag=ab-chronicfatig&msg=1863.1&mode=advanced IN OUR WORLD “To make no mistake is not in the power of man; but from their errors and mistakes the wise and good learn wisdom for the future.” Plutarch (46-120A.D.) Chronic fatigue syndrome in childhood. Authors: Tomoda A, Miike T, Yamada E, Honda H, Moroi T, Ogawa M, Ohtani Y, Morishita S Affiliation: Department of Child Development, Kumamoto University School of Medicine, Japan. tomo@kaiju.medic.kumamoto-u.ac.jp Journal: Brain and Development (ISSN 0387-7604) 2000 Jan;22(1):60-4 NLM citations: PMID: 10761837, UI: 20222474 The authors discuss the history and testing of three CFS patients, ages 11, 12 and 13. As measured by SPECT scan, cerebral blood flow in the left temporal and occipital lobes were markedly lower in two of the patients compared to previously-reported levels in healthy subjects. In the third case, blood flow in the left basal ganglia and thalamus was markedly higher than in healthy subjects. There was also remarkable elevation of the choline/creatine ratio in all three patients. Authors think clinical CFS symptoms “may be closely related to an abnormal brain function”. New York Times, Wednesday May 17 .... 3M will no longer make Scotchgard as their own research shows that the primary ingredient, perfluorooctanyl, persists in the environment for years and can be found in human blood samples, saying the product is completely safe and hasn’t harmed anyone, but feel that it is their corporate responsibility to remove it because it doesn’t decompose. . .Contradictory, but at least what their scientists are telling them is being heard. 3M denies plans to replace it with anything else because they have been unable to produce an environmentally friendly product that works. Group Wants Tests of Some Chemicals ...CAREN BENJAMIN, WASHINGTON (AP) A pregnant woman who spends a few hours on a home-improvement project may unwittingly be putting her child at risk for problems ranging from hyperactivity to autism, the Greater Boston Physicians for Social Responsibility said, because of chemicals in common household products like solvents and pesticides. Because of lack of government mandated testing for these products, no one knows how dangerous they are to human brain development In their report they state that tests on animals show there is cause for concern about products ranging from glue to flea collars to nail polish, and the group wants the governent to start requiring tests prior to marketing. Dr. Jill Stein, Harvard Medical School and one of the report’s authors. The physicians stressed such data is not available for most chemicals, so it would be better to hold off on distribution until the products are proven to be safe. Currently, chemicals must be tested for their affects on the physical structure of the brain of laboratory animals before they can be sold, said Dr. Ted Schettler, one of the report’s authors. The tests do not, however, measure how the brain works after being exposed to the chemical, he said. “What we think of as safe in our early studies of these chemicals often turns out to be wrong,” Schettler said. Of the approximately 15,000 commonly sold chemicals on the market, only 12 have been tested specifically for their effects on brain development, according to report co-author David Wallinga, senior scientist with the Natural Resources Defense Council. LONG TERM DISABILITY PATIENTS NEED TO SHARE THIS TECHNICAL ARTICLE WITH THEIR LAWYER JUDY DOC WINS A BIG COURT BATTLE United States District Court District of Massachusetts Judy Morris, M.D., Plaintiff v. UNUM Life Insurance Company of America, Defendant Civil Action: No.99-30200-FHF MEMORANDUM AND ORDER May 15, 2000 FREEDMAN, S.J.=20 In one of two cases filed in this Court by Dr. Judy Morris against Unum Life Insurance Company of America seeking to recover long-term insurance benefits for the time period Chronic Fatigue Syndrome CFS purportedly her disabled from her position as an emergency room physician. She believes that UNUM violated Title III of the Americans with Disabilities Act, 42 U.S.C. 12181-12189 Title III and, specifically, 42 U.S.C. 12182(a), in its claims process, by employing a policy of classifying her and others with CFS as mentally disabled. Morris claims that CFS is a physical disability, but that Unum utilized the mental-disability classification to limit her coverage to two years under the policy terms, as opposed to the unlimited coverage due her for a physical disability. Unum moves to dismiss Morris claims. Title III provides that: No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation. 42 U.S.C. 12182(a). Denying individuals the opportunity to benefit from the goods, services, privileges, advantages or accommodations of an entity because of their disability constitutes impermissible discrimination. See 42 U.S.C. 1218= 2(b); Carparts Distrib. Center, Inc. v. Automotive wholesalers Assoc. Of New England, Inc., 37 F. #d 12, 18 (1st Cir. 1994). Carparts made clear that Titles III application extends beyond simply granting the disabled access to physical places; rather, it requires a place of public accommodation to provide the same services to the disabled as it provides to those who are not. See Carparts, 37 F. 3d at 19-20; Pallozzi v. Allstate Life Ins. Co., 198 F. 3d 28, 32-33( 2d cir. 1999). Title III applies to insurance companies and the services they provide in the same manner as it applies to any other place of public accommodation. Court recognizes other circuits disagreement with Carparts but finds their reasoning unpersuasive. First, 42 U.S 12181(7) begins the definition of public accommodation by providing a list of entities, rather than places, that are considered places of Public accommodation. Second, 42 U.S. C. 12181(7) continues on to provide a broad and extensive list of specific and general categories of businesses, services, and places, see id., arguably intended to cover all possible offenders of the statutes purpose, to bring individuals with disabilities into the economic and social mainstream of American life. Third, 42 U.S.C.12182(b)(2)(A) defines specific prohibitions under Title III: Imposing eligibility criteria to screen out the disabled and failing to modify policies and practices that do the same thing; but requiring the removal of architectural barriers to allow physical access. The Sixth Circuits holding that Title III applies only to physical places open to public access, renders all but the third prohibition mere surplusage. In addition, holding that protection to those with disabilities extends only to physical structures or services provided within these structures creates absurd results clearly unintended by Congress. Many business and service establishments listed as public accommodations in 42 U.S.C. 12181(7) provide services in locations other than their premises. For example, pharmacies and restaurants often have delivery services; gas and service stations provide towing services; hospitals and health care services provide ambulance services; and banks, attorneys, and accountants often provide services outside of their offices. Under the physical place with public-access-only interpretation, a restaurant or pharmacy with a delivery service cannot lawfully deny a disabled person service at the restaurant or pharmacy. But the same establishment could lawfully refuse to deliver a meal or prescription to the home of a wheelchair-bound patron. Similarly, a tow truck driver could lawfully refuse to jump-start a disabled patrons car on the street, but not if the patron rolled into the stations premises. An ambulance could lawfully refuse to pick up an AIDS patient dying of pneumonia. A lawyer meeting a client at home could lawfully refuse to perform the necessary services because the client is quadriplegic, so long as she did so before she left the clients house or returned to her office. Because Congress listed many service, sales and rental establishments, including insurance offices, which provide goods and services in diverse locations other than their primary place of business, the Court concludes that Congress intended public accommodation under 42 U.S.C. 12181(7) to cover more than simply physical places. As a result, the Court follows the First Circuit Carparts opinion, and concludes that Title III of the ADA applies not only to the offices of insurance companies but also to the services they provide. See id. Title 42 of the United States Code, Section 12201 carves out of the ADA a specific safe harbor provision for some practices of insurers stating that: Titles I through IV of [the ADA] shall not be construed to prohibit or restrict --(1) an insurer, hospital or medical service company, health maintenance organization, or any agent, or entity that administers benefit plans, or similar organizations from underwriting risks, classifying risks, or administering such risks that are based on or not inconsistent with State law. 42 U.S. C. 12201©(1). While Morriss brief lacks clarity, her complaint and reasoning at oral argument make apparent the basis of her claims. Here, Morris alleges that Unum treated her differently in its claims process, all because she claimed disability based on CFS. Specifically, Morris claims that Unum intentionally conducted an inadequate investigation of her case, harassed her, engaged in intentionally malicious claims tactics, and deliberately misdiagnosed her CFS as a mental disability in order to limit her benefits to the two-year mental disability period. She claims that Unum formulated a policy of treating CFS claimants differently in the claims process than other claimants and denied her claims in accordance with that policy. Morris asserts that Unum intentionally implemented the policy of mischaracterization to take advantage of, and profit from, CFS claimants lower energy and consequent inability to mount a sustained battle to recover rightful benefits. The Court finds that Morriss allegations of mischaracterizations do not relate to underwriting, classifying, or administering risks and concludes that would be permitted under the safe harbor provision of 42 U.S. C. 2201. Because Unum claims process falls under the goods or services that it provides to all of its customers, the Court concludes that application of the claims process in an intentionally discriminatory manner violates Title III. Consequently, Morris asserts a claim upon which relief may be granted when she alleges that Unum treated her differently in its claims process because she had CFS. Accordingly, the Court DENIES Unums motion to dismiss Morriss claims under Title III of the ADA. Because the Court views the allegations supporting Morriss claims of discrimination to be based upon substantially the same factual occurrences as those involved in her ERISA claims against Unum, the Court, of its own accord and in the interest of judicial economy, CONSOLIDATES the two cases (Civil Action No. 99-30200 and Civil Action No. 98-30204). It is so ordered. Frank H. Freedman Senior United States District Judge. CFS CHUCKLES Anonymous Internet Humor! SIGNS THAT YOU’VE HAD TOO MUCH OF THE 90’s > > 1. You just tried to enter your password on the microwave. > > 2. You check the ingredients on a can of chicken noodle soup to see if it contains echinacea. > > 3. The concept of using real money, instead of credit or debit, to make a purchase is foreign to you. > > 4. Cleaning up the dining room means getting the fast food bags out of the back seat of your car. > > 5. Your dining room table is now your flat filing cabinet. > > 6. Your idea of being organized is multiple-colored Post-it notes. HMMM - Mahatma Gandhi, as you know, walked barefoot most of the time, which produced an impressive set of calluses on his feet. He also ate very little, which made him rather frail, and with his odd diet, he suffered from extremely bad breath. This made him what? (Oh man this is good.......) A super callused fragile mystic plagued with halitosis. SAY IT TWICE, REALLY FAST - IF YOU CAN READ IT TWICE REALLY FAST, YOU’RE ON YOUR WAY TO GETTING BETTER - EXPRESSIONS FOR WOMEN ON HIGH STRESS DAYS 1.. You - off my planet. 2. Not the brightest crayon in the box now, are we? 3. Well this day was a total waste of makeup. 4. Sarcasm is just one more service we offer. 5 .I’m trying to imagine you with a personality. 6. Stress is when you wake up screaming and you realize you weren’t asleep. 7. I can’t remember if I’m the good twin or the evil one. 8. How many times do I have to flush before you go away? 9. I just want revenge. Is that so wrong? 10. You say I’m a bitch like it’s a bad thing. 11. Nice Perfume. Must you marinade in it? 12. Earth is full. Go home. 13. Is it time for your medication or mine? 14. How do I set a laser printer to stun? 15. I’m not tense, just terribly, terribly alert. Because Shaya didn’t even know how to hold the bat properly, let alone hit with it. However as Shaya stepped up to the plate, the pitcher moved a few steps to lob the ball in softly so Shaya should at least be able to make contact. The first pitch came and Shaya swung clumsily and missed. One of Shaya’s teammates came up to Shaya and together they held the bat and faced the pitcher waiting for the next pitch. The pitcher again took a few steps forward to toss the ball softly toward Shaya. As the pitch came in, Shaya and his teammate swung at the ball and together they hit a slow ground ball to the pitcher. The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman. Shaya would have been out and that would have ended the game. Instead, the pitcher took the ball and threw it on a high arc to right field, far beyond reach of the first baseman. Everyone started yelling, “Shaya, run to first. Run to first.” Never in his life had Shaya run to first. He scampered down the baseline wide-eyed and startled. By the time he reached first base, the right fielder had the ball. He could have thrown the ball to the second baseman who would tag out Shaya, who was still running. But the right fielder understood what the pitcher’s intentions were, so he threw the ball high and far over the Third baseman’s head. Everyone yelled, “Run to second, run to second.” Shaya ran towards second base as the runners ahead of him deliriously circled the bases towards home. As Shaya reached second base, the opposing short stop ran to him, turned him in the direction of third base and shouted, “Run to third.” As Shaya rounded third, the boys from both teams ran behind him screaming, “Shaya run home.” Shaya ran home, stepped on home plate and all 18 boys lifted him on their shoulders and made him the hero, as he had just hit a “grand slam” and won the game for his team. “That day,” said the father softly with tears now rolling down his face, “those 18 boys reached their level of God’s perfection.” Funny how this is so true and shame on us! Funny how simple it is for people to trash different ways of living and believing and then wonder why the world is going to hell. Funny how I can be more worried about what other people think of me than what I think of me. FUNNY ISN’T IT! Shared by Jupy Stout from a rabbi friend Think We’ve Got Problems Finding Our Keys? How would you like to be the guy on the front page of the High Point Enterprise, June 16, 2000? He 1) lost his keys in a portable potty 2) got into the toilet to look for his keys. 3) when children hearing the man’s cries told their mom, he was stuck in the lower chamber, up to his hips 4) the toilet seat was wedged around his body?! Thank God for small favors! I’ve locked mine in the car at the grocery store, but at least I’ve never had to explain myself being stuck in a toilet seat! Really Bad Joke A baby pigeon and his mother were going to fly south for the winter. Trying all types of logic, the mother pigeon was having a difficult time convincing her new baby that he too could fly. The baby pigeon cried, “I can’t make it ... I get too tired.” His mother said, “Don’t worry; I’ll tie a piece of string to one of you legs and the other end to mine.” The baby started to cry. “What’s wrong?” said the mother. The baby said, “I don’t want to be pigeon towed!” - Submitted by: Jupy Stout IT WORKS FOR US! Cleaning With a Minimum of Energy Zout - stain removal; put a bottle in laundry basket where you put dirty clothes and squirt a bit on stain as you put item in basket. Then wash, and voila - even with set in dried, prewashed and dried stains. I also use on car cloth seats to remove stains there. TuffStuff - pet stain removal, car upholstery Febreeze - pet odor removal MEETING NOTES UPCOMING WINSTON-SALEM SUPPORT GROUP: Dr. Jorge Fletchas, Hendersonville, NC, Collaborates on Arnold-Chiari/FMS with Dr. Michael Rosner (336)723-7624 for more info, date TBA. Ask Marvina about her trip to see Dr. Fletchas. He shared an article “Pain in patients with Spinal Cord Injury,” Authors Nepomuceno, Fine, Richards, Gowens, Stover, Rantanuabol, Houston, from Arch Phys Med Rehabil, Vol. 60, Dec. 1979 showing people with our FMS symptoms related to spinal injury in literature as early as the 1970’s. Dr. Fletchas is currently collaborating with Dr. Rosner on CFIDS/FMS and Arnold-Chairi connection, and will present research results next year at the Internation FMS Conference. They both practice in collaboration with the Park Ridge Hospital of Hendersonville, a Seventh Day Adventist hospital encouraging the combination of faith and medicine. Due to the latest 20/20 program on Dr. Rosner’s work, they seemed very knowledgeable about testing; with the atmosphere of respect and knowledge palpable when interacting with their staff. I long for the day to come soon when that will be the norm, and not the exception. FOR SALE, ETC. If you have any goodies & services that might benefit the group and your CFIDS budget, call them in to us for a one time brief listing! Ads are also available in the newsletter to run for one year for $100. Advertise your business or service! Videotapes ($20), audiocassettes ($10) of Dr. Lapp’s meeting, Information packets w/ docs list, therapies, etc.: ($5) Mail check payable to Greensboro CFIDS/FMS Support Group to Treas. Marvina Powers, 107 Wall Ave., Thomasville, NC 27360. Items will be shipped to you, or will be available at the next two monthly meetins. In good condition ... RV ... Call Tom Castle (454-8888); 1994 Jeep ... Call Margaret Holt (869-0991) Full basement apt. in Archdale for CFS/FMS single to rent beginning Aug., $400 inc. utilities, fully furnished, shower, kitchenette. Christian family, wife has CFIDS/FMS, no smoking or pets. 431-1035.
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