COALITION OF SILICONE SURVIVORS

P. O. Box 129 Broomfield, CO 80038-0129

Lynda Roth - (303) 469-8242

March 1998

Dear Silicone Survivors and Friends:

The February issue of Harpers Bazaar has a very interesting silicone and womens' health issue article. The February issue of Alternative Medicine Digest has an article about Muriel Hemingway and her breast implant problems. The March issue of Alternative Medicine Digest will have Jenny Jones pictures and article.

We lost at least three more women in February. One was Dorothy Black (43 yrs. Old), one was Jackie Crawford, one was Erma Van Meter of Lakewood, CO. This illnes continues to devastate our women as the manufacturers continue to deny that it causes problems. Where are the ethics??

CALL TO ACTION: The English SUN, the largest selling newspaper in the UK, is calling for breast implant women to write them. Last year the Scottish SUN put out the same plea and heard from thousands of women from around the world. The object of the move was to ascertain just how broad spread the problem with implants was. They found out, receiving over 500 letters in one day. The letters came from twelve countries and each one told the same story, illness after having implants. The only common thread among the women, throughout the world, seemed to be that they all had breast implants.

The English Sun is asking women to fax (or write) them with their personal stories with implants. They too want to see the scale of the problem. Selected media and medical journals are issuing stories, some of them five years old, about the safety (or at least the lack of evidence) of implants. It is believed that this is a maneuver to influence the British Review Board appointed by Baroness Jay, British Health Minister, to NOT take silicone implants off the market. The Review Board is due to make its announcement in three weeks. It is very important that women from the USA, Canada, and all other countries respond to this call. Please fax a one page letter to: The SUN in London, England, (01144) 171-782-4063. Margo Cameron, Scotland Shirley Goodner, USA The Networker

LEGAL: NY ,Robert Liu, (CNN), Dow Corning Corp. Tuesday proposed a new $4.4 billion settlement to compensate its creditors and

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the thousands of women allegedly injured by silicon-gel breast implants. However, the

proposal, which still needs the approval of U.S.Bankruptcy Judge Arthur Spector who oversees Dow Corning's nearly three-year-old bankruptcy, received mixed reaction and could potentially cause a row between the creditors and the female plaintiffs, collectively known as the tort claimants. Under the plan, the Midland, Michigan-based Dow Chemical Co./Corning Inc. venture proposed to put up its own equity to finance the tort group's claims. The latest offer tops an August offer by at least $640 million. The proposal also would split up the tort claimants into two groups: those women who wish to settle and those who wish to litigate. The plan would establish a litigation trust, financed with the help of Dow Corning's equity value, as well as a settlement trust, with $3 billion targeted primarily at resolving breast implant claims.

About $1.4 billion of the $4.4 billion would be used to satisfy the claims of commercial creditors, a group that is encouraged by the proposal. "I'm very encouraged because I think this is a serious proposal that warrants a serious response from the [tort] claimants and it represents a substantial step forward in the case," said Donald Bernstein, a lawyer at Davis Polk & Wardwell, who represent a key group of creditors. Creditors were evaluating the proposal and declined to issue an official comment. However, the proposal received harsh criticism from the tort claimants. Based on initial evaluations, the plan would pay most of the women $10,000 or less if they choose to settle, a spokeswoman said. In addition, final payment could take as much as 10 years.

One attorney said this: 2/17/98, ATLANTA (BUSINESS WIRE) Today, Dow-Corning is offering to set up a plan in Bankruptcy Court to establish a fund to pay $3.0 billion to women who allege injuries due to defects in silicone breast implants. This offer is $640 million above prior resolution plans. The total fund would be divided into two parts with one trust fund to pay women who settle and the other fund would be used for cases that go to court. $1.4 billion would pay the remaining creditors in Dow-Corning's Chapter 11 proceeding. According to Thornton & Leff, an Atlanta law firm representing implant claimants, "a fair plan must estimate the value of claims and pay fair awards,'' says Guerry Thornton and his partner Michael G. Leff. Thornton believes a plan should be pro-claimant and provide causation links to certain diseases. "Any plan should be modeled after the $2.4 billion Dalkon Shield Trust which delivered fair awards consistent with historical values," says Thornton, whose firm collected over $40 million for Dalkon Shield victims in the A.H. Robins Chapter 11 case. Silicone implants have caused an avalanche of claims against manufacturers and distributors.

LOS ANGELES, 2/17/98 (PRNewswire) The Command Trust Network, an information clearinghouse for women with breast implants, issued the following: Almost three years after filing for bankruptcy protection, Dow Corning has proposed yet another inadequate reorganization plan, according to the Tort Claimants' Committee, the official committee representing women with silicone breast implants. The fundamental problem with the plan, according to plaintiffs' attorney Ed Blizzard, is that it does not provide real compensation for the harm caused to these women. "This plan instead offers token payments years down the road," said Blizzard. "Dow Corning is again offering too little too late," said Sybil Niden Goldrich, co-founder of the Command Trust Network, an information clearinghouse for women with silicone breast implants. "I am extremely disappointed that Dow has failed again to provide fair compensation in a timely way for women who have suffered."

Key flaws in Dow Corning's plan: Although Dow Corning says it is offering $4.4 billion, the true payment to women with silicone implants amounts to significantly less than $2 billion in today's dollars. This is because $1.4 billion in the plan would be paid to commercial creditors. In addition, payment to the women would take place over almost two decades, reducing present value to less than $2 billion. It encourages women to accept a minimal fee of only $1,000 in exchange for giving up rights to all further payment for damages if they develop a serious disease later. It restricts most sick women to payments of $10,000 or less. Many women will not have their claims settled for more than ten years. Dow stipulates that a woman must be sick for four years before it will even begin to process the claim. Given the slow pace at which Dow will process claims (6,500 a year), there is no guarantee of payment before the year 2010. "They don't want to treat us fairly after all the problems their product caused," said Suzy Cunningham of Toledo, OH, whose implants broke, leaked and created extensive pulmonary problems resulting in surgery that cost $20,000. Pam Noonan-Saraceni of New Fairfield, CT, said that based on Dow's past behavior, she has no reason to trust the company. "For years they have refused to do the right thing by the women," said Noonan-Saraceni, who has incurred $35,000 in medical expenses due to problems from silicone breast implants, including continuing expenses for pain management.

The plan released today is the company's third plan, after a Federal bankruptcy judge dismissed the company's second plan in November, calling it a "monumental waste of time." Representatives of the women with silicone breast implants are seeking the opportunity to file their own plan with bankruptcy court. "We have offered a solution to this bankruptcy that we think is fair to all parties and we would like the opportunity to file it in court," said Blizzard. "Dow has had three chances to propose a fair plan and they failed. We believe it's now time for the creditors to have the opportunity to file a plan," he continued. SOURCE: Command Trust Network, Inc.

I have tried to find out whether the other persons who filed claims are covered under this new proposal. Apparently, anyone with other silicone implantable devices or those with components (Surgitek, McGhan, et al.) and those with Mentor implants are not covered under this unless they also had at least one actual Dow Corning breast implant, silicone or saline. Also, I found no coverage for insurance subrogation or a limitation on attorney fees. (Not sure of this information, but it is what I could glean at this time.)

We will cover this more fully as the facts come in, but we will not take a position one way or another on this proposal unless it is approved by the court and the voting process begins. That is the time for us to tell you what we think of any proposal!! Please do not ask before that time. Get the facts and decide for yourself. You may discuss this with your attorney but not with other implant survivors if you are stating an opinion on whether it is a good or a bad proposal. We are not to discuss this issue other than the terms that it contains. We cannot tell you if we think it is bad or good. When (and if) it comes up for a vote, we can tell you what we recommend.

TORONTO (AP) About 3,000 women in Ontario and Quebec are expected to split $15 million following an agreement with a U.S. company that makes silicone breast implants. "It's been a long time coming,'' Michael Peerless, a lawyer representing women involved in a class action launched in 1993, told a news conference. The settlement with Baxter Healthcare of Deerfield, Mich., applies to women who received Heyer-Schulte implants between Sept. 1, 1971, and March 30, 1984, or who lived in Ontario or Quebec as of June 23, 1994, but received implants elsewhere. Baxter Healthcare acquired the liabilities of the now-defunct Heyer-Schulte Corp., maker of Heyer-Schulte and Jenny silicone implants. The company is among a half-dozen manufacturers involved in lawsuits because of concerns that the implants cause a range of problems.

The company's lawyers said the settlement was not an admission of liability but was viewed as a compromise to end costly litigation. The settlement must be approved by the courts before women are compensated and the sums will vary depending on the problems experienced. Hearings will be held in Quebec on March 27 and in Ontario three days later, Peerless said. It is the second major settlement of its type in Canada. In 1995, a fund was negotiated by Peerless' firm for about 5,000 Ontario and Quebec women thought to be eligible for compensation after receiving implants made by Bristol-MyersSquibb. (What this report fails to mention is that the women will only receive about $3000 each.)

LOS ANGELES, 2/13/98, (PRNewswire): The Command Trust Network, an information clearinghouse for women with breast implants, issued the following: In a significant and unanimous decision, the Oregon Court of Appeals, (Wednesday, February 11, 1998) ruled that Oregon plaintiff Nancy R. Jennings can rely on a qualified doctor's opinion to show a link between silicone breast implants and atypical disease. The appellate court's ruling overturns the trial judge's ruling which sided with manufacturers who sought to exclude the expert testimony of Dr. Robert Grimm, a board-certified neurologist. After Multnomah County Circuit Judge Frank Bearden had refused to permit Dr. Grimm to testify, the jury returned a defense verdict in January, 1996. The appellate court granted a new trial.

The Jennings ruling is expected to have significant national impact, since it authoritatively interprets the law of toxic tort causation in a way inconsistent with U.S. District Court Judge Robert E. Jones' decision. Judge Jones had interpreted Oregon law to require epidemiological evidence, but the Oregon appellate court said such evidence is not required to show causation if a qualified doctor has seen a consistent pattern of a new syndrome in women exposed to breast implants. In 1996, Jones' decision severely limited the right of medical experts to present evidence about the link of silicone breast implants to disease in the Oregon cases. Many states have similar laws and this decision is expected to be powerful precedent in these jurisdictions as well. "This is a huge victory for all silicone breast implant women who suffer from atypical rheumatic & neurological diseases,'' said Michael L. Williams of Williams & Troutwine, a Portland law firm that has played a lead role in the breast implant litigation nationwide. "This means that sick women will finally get a meaningful day in court. This ruling means juries will get to hear the new scientific evidence showing the link between silicone exposure and disease.'' The atypical disease suffered by Nancy Jennings is a cluster of symptoms including chronic fatigue, severe joint pain and neurological problems from which many women with silicone breast implants suffer. The National Institutes of Health has called for further research into atypical disease and its link to silicone, and the first stage of a massive epidemiological study of this new atypical silicone disease under the supervision of Dr. Louise L. Brinton is nearing completion this spring. Dr. Grimm's evidence regarding neurological damage according to the Court of Appeals, shows a "unique pattern'' among patients with silicone breast implants. 95% of his implanted patients had two neurologic symptoms in common: inner ear dysfunction and a loss of sensation in the extremities, also known as peripheral neuropathy. A recent UCLA study by noted epidemiologist Dr. Sander Greenland published since Judge Bearden and Judge Jones had made their earlier rulings, confirmed that peripheral neuropathy, a common feature of many auto-immune diseases, occurs at a two-fold rate of increase in men and women with silicone implants. People with silicone implants were shown by this same study to have four times the rate of inner ear dysfunction, which is marked by balance problems and hearing loss. "There are tens of thousands of women all over the country sick with atypical disease. This ruling has the potential to give them the opportunity for their true problems to be heard in court,'' said Williams.

The Oregon appellate decisions also rejected the manufacturers' contention that the national group of rheumatologists headed by UCLA physician Dr. Stuart Silverman, who have been contending for years that many women with silicone breast implants show a pattern of atypical rheumatic and neurologic disease, was not scientific. The court said: "Silverman's hypothesis that a silicone related disorder exists is based on scientific methodologies that are in accordance with the general processes of how physicians undertake to identify new diseases or disorders. Silverman's hypothesis regarding silicone-related disorder has been accepted by a panel of his peers. The panel uses a scientific approach to develop conclusions about the existence of new disorders, diseases, and conditions. In light of the above evidence, we conclude that the trial court did not err when it allowed Silverman to testify that silicone-related disorders exist and that plaintiff suffers from such a disorder.'' SOURCE: Command Trust Network, Inc.

1/29/98, Denver Post:, Ginny McKibben: A Denver woman who took up an offer for 'free' breast implant surgery from a Colorado plastic surgeon claims the physician botched the operation and left her disfigured, according to a lawsuit filed in Arapahoe County District Court. Jeanne Rooney filed the lawsuit against Dr. John H. Emerson Jr. this month, claiming he was negligent in the performance of her May 23 surgery. Rooney claims Emerson conducted her presurgery examination at an Aurora hotel, then inserted breast implants during a weekend trip to Walsenburg and finally abandoned her in the weeks after the surgery. "When I heard the facts of what happened here, I got angry,'' said Rooney's lawyer, Neil Hillyard.

Emerson could not be reached by telephone Wednesday at the Conejos Family Wellness Center in La Jara or the Huerfano Medical Center in Walsenburg, CO. The residential telephone listed in his name in La Jara has been disconnected. Emerson, 45, has practiced medicine in Colorado since 1990 and has never been disciplined by the board of medical examiners, a spokeswoman for the board said. Emerson, who once had an Aurora office, travels between La Jara and Walsenburg. He performs surgeries at the local hospitals. In her lawsuit, Rooney accuses Emerson of negligence and claims he misrepresented his experience in breast implant surgeries. Rooney says she met Emerson through a friend. She says he offered to perform free breast implant surgery on both women.

Emerson conducted his examination of her at the Doubletree Hotel in Aurora where he determined she was a favorable candidate for breast implant surgery, Rooney claims in the suit. The two women flew to Walsenburg, a city about 150 miles south of Denver, where Emerson had arranged to insert the implants at the Huerfano Medical Center. He performed the surgeries on May 23, releasing the two women from the hospital the same day. Rooney returned to the hospital for pain medication on May 24, then flew back to Denver the following day. The physician told Rooney he would meet her back in Aurora the week after the surgery to check on her condition and to remove her surgical sutures, but failed to keep his promise, the lawsuit says. Rooney is seeking unspecified money damages to cover the costs of hiring another surgeon to perform operations to correct the disfigurement caused by Emerson's work, the lawsuit says. She also claims damages for physical and emotional pain, humiliation, embarrassment and loss of time caused by the surgery.

2/13/98 ATLANTA (AP): Girls treated with chest radiation for childhood cancer should receive a mammogram at age 25 because they face a significantly higher risk of developing breast cancer than other women, researchers say. The suggestion of such an early mammogram, 15 years earlier than recommended for most women, is because such women are 20 times more likely to develop breast cancer, according to a study published Thursday in the journal Cancer.

Doctors have long wondered whether childhood cancer survivors needed special screening because of growing evidence that they face higher cancer risks. Radiation is a common treatment that kills cancer cells, but it can damage other cells, which can, in turn, become cancerous clusters. "In discussions with pediatric groups, how to follow these young women has been debated for several years," said Dr. Melissa Hudson, a pediatric hematologist at St. Jude Children's Research Hospital in Memphis, Tenn. "We would get calls from doctors asking what to do." In the study, Ms. Hudson and other researchers traced the medical records of 3,436 girls treated for cancer at the hospital between 1962 and 1995. Some were diagnosed before age 10. They found that 12 of these girls later developed breast cancer, about 20 times the rate of the general female population. Four of them, or one-third, developed breast cancer before age 25 (one of them at age 12). Normally, only 0.2 percent of breast cancers occur before age 25. "That's a phenomenal finding," said Dr. Sue Kaste, an osteopath at St. Jude and one of the researchers. "These are happening at a time when health care providers don't think of breast cancer occurring." Six of the 12 women who developed breast cancer had radiation treatments as children for Hodgkin's disease, a cancer of the lymph system.

"The sad fact is that these treatments are quite harsh and can have lasting effects," said Robert Smith, director of cancer detection at the American Cancer Society in Atlanta. "But these are individuals who are at high risk of dying without treatment." Researchers suggested that after the first mammogram at 25, childhood cancer survivors get one every three years until 40. They also suggested annual breast exams by a doctor between puberty and 25 and two exams a year after that. After 40, they should have a mammogram every year, the researchers said. Dr. G. Marie Swanson, director of the Michigan State University cancer center, questioned the value of early mammograms, saying young women's breasts can be too dense to find anything. "I wonder how much you would be able to learn from that," Ms. Swanson said. "It's going to be highly variable."

1/28/98, BOSTON (AP) A new study challenges the long-held belief that multiple sclerosis damages nerves in the brain solely by stripping off their insulation. The research found that the disease actually severs nerve fibers in the brain, causing irreversible damage that probably begins even before symptoms are noticed. The research raises the possibility that patients should begin treatment very early in the disease. "This paper changes our perception of the underlying nature of multiple sclerosis," said Dr. Richard Rudick of the Cleveland Clinic Foundation, a co-author of the study. Experts long believed that MS did its damage almost exclusively by attacking myelin, the protecting covering on nerve fibers, in the brain and spine. This was thought to interfere with the fibers' ability to transmit signals and led to the many different symptoms of MS. The new study shows that besides stripping off myelin, the disease frequently slices through the nerve fibers themselves, destroying their ability to carry messages.

Rudick said the study is the first to actually visualize these severed cells through a microscope, although indirect hints of this have been building up for several years. For instance, magnetic resonance imaging (MRI) has shown that MS victims' brains actually shrink, suggesting loss of nerve cells. Dr. Stephen Reingold of the National Multiple Sclerosis Society said the earlier clues had already led many experts to conclude that the disease damages and perhaps cuts nerve cells. While the latest finding is likely to be news to practicing physicians, Reingold said, "this will not be a surprise to scientists in the field." The study, directed by Dr. Bruce D. Trapp, was published in Thursday's issue of the New England Journal of Medicine.

About 350,000 Americans have MS and it most often begins when victims are in their 20's. Symptoms often include numbness, tingling, poor coordination, slurred speech and weakness. While the precise cause is unknown, experts know that inflammation, perhaps caused by a misguided attack on the body's imunse system, damages the nerves. Rudick said the research suggests that doctors may need to be more aggressive in treating MS with medicines such as interferon that may protect nerves from permanent destruction. However, Reingold cautioned that there is no proof that this early treatment actually slows the disease.

2/4/98, Pittsburgh, Kristen Hays (AP), The Morning Call, Inc.: Men who struggle with impotence may find it difficult enough to confront the problem without facing a solution that fails. But western Pennsylvania men suing the manufacturer of their failed penile implants have since tried other implants that work, thanks to improvements in the technology. "Devices made 10 or 15 years ago have been tremendously improved through technology,'' said Dr. Frank Costas of Pittsburgh, a physician to the four men. "As with heart valves and breast implants, there is continuous research and improvement.'' George Marcus, Victor Bianculli and Charles Smith of Pittsburgh and Harry Sigafoos of Crawford County underwent penile implant surgery between late 1989 and April 1991 and found their sex lives restored.

It didn't last. According to the lawsuit, their implants were among a defective batch manufactured by Medical Engineering Corp., Racine, Wis., a subsidiary of Bristol-Meyers Squibb Co. Each of the four is suing MEC and Bristol-Meyers for $75,000 for medical bills and distress. A fifth plaintiff, Smith's wife, Dorthea, is also suing, because the implant failure robbed her of her husband's companionship. The men claim in a lawsuit filed last week in U.S. District Court in Pittsburgh that the Surgitek Uni-Flate 1000 implants failed to fulfill their 10-year warranty, forcing surgical removal followed by new implants made by another company.

Patrick Donahoe, associate director of public affairs for Bristol-Meyers, declined to comment on the lawsuit or discuss the implant in question, though he confirmed that it is no longer made. He said the company was surprised by the allegations. Costas, who has performed penile implant surgery on thousands of men, said the lawsuit is about a defective device that isn't made anymore. It didn't make the men sick, nor did they have complications from the surgery, he stressed. The implant failure just left them with the same problems they had before surgery. "There is not a problem with penile implants,'' said Costas. "There is a problem with how these were made. It happened to be a bad lot of this type of implant.'' The defective implants lasted two years to four years for patients across the country, including the four plaintiffs, he said. Dr. Harin Padma-Nathan, a nationally known urology expert whose practice at The Male Clinic in Santa Monica, CA, focuses on treating impotence, suggested that implant failure is not rare. He said one-tenth to one-fifth of all penile implants fail in the first five years. "If 80 percent fail in the first year, there's a problem,'' he said.

Padma-Nathan recommends implants after patients have tried less invasive treatments. About 30 million men nationwide suffer from impotence at any given time, Costas said. Most who seek therapy turn to drugs, penile injections, vacuum constriction devices or implants to restore ability to have an erection. Doctors generally recommend these treatments for impotence induced by illness, surgery or injury, not psychological problems. Only 10 percent choose implants, Costas said, but the devices have a higher satisfaction rate than other impotence treatments. "It restores a very personal part of their lives that otherwise would have gone into oblivion,'' Costas said. "It's the most natural function in the male sexuality.''

1/16/98, Philadelphia, David Morgan, (Reuters): Hundreds of lawsuits filed on behalf of Americans who used the diet-drug combination known as fen-phen have begun moving toward possible class-action status, attorneys and court officials said Friday. More than 200 lawsuits filed in nearly 60 courts across the United States were consolidated in Federal District Court in Philadelphia last month. This week, U.S. District Judge Louis Bechtle began the process of establishing a management committee to represent plaintiffs during the discovery phase of the case. The judge gave plaintiffs' attorneys until Jan. 29 to apply for a seat on the panel, which he was expected to appoint in March. Many of the likely candidates are veterans of other high-profile class actions involving breast implants, tobacco, asbestos and thalidomide.

The term "fen-phen"' refers to a once popular diet-drug cocktail consisting of fenfluramine or its chemical cousin dexfenfluramine and phentermine. Fen/phen drugs were pulled from the market in September at the request of the FDA after reports linking the drugs to heart-valve abnormalities. Phentermine, the "phen" in fen-phen, was not withdrawn. Dexfenfluramine is made by Interneuron Pharmaceuticals Inc. and sold under the brand name Redux by Wyeth-Ayerst Labs, a Radnor, Pennsylvania-based subsidiary of American Home Products Co. Wyeth-Ayerst also manufactures and sells fenfluramine under the brand name Pondimin. Since the withdrawal, product liability suits have been brought against at least a dozen pharmaceutical companies involved in the manufacture and sale of the fen-phen drugs, as well as against some of the physicians who have written approximately 14 million prescriptions since 1995.

MEDICAL INFORMATION: NY (Reuters) Children More Allergic Than Parents:: Children with asthma, rhinitis (a chronic runny nose), or both appear to be significantly more sensitive to certain common inhaled allergens than their parents, according to a recent report in the Annals of Allergy, Asthma, and Immunology. Dr. Giovanni A. Rossi and colleagues at the University of Genoa performed skin prick tests on 85 randomly chosen child outpatients and their parents. They found that about 73% of the children suffered from asthma while the remainder had rhinitis. Further skin-prick testing revealed that approximately 52% of children and 34% of parents showed sensitivity to house dust mites. Pollens provoked a reaction in 33% of children and just 17% of parents. Pet 'extracts' (cat and dog danders are both known allergens) led to a response in 26% of children, but only in 4% of parents.

Also, the study found that the prevalence of allergies was slightly higher in children whose parents were hypersensitive to the presence of various allergens. The incidence of hypersensitivity was also greater in children of parents who showed reactions to more than one allergen. The researchers speculate that a genetically inherited predisposition for allergies along with childhood exposures to environmental allergens may work together to "influence the development of specific sensitization in children with respiratory symptoms." SOURCE: Annals of Allergy, Asthma and Immunology (1997;79:512-516).

If you have opted-out and are considering taking the recent offers from manufacturers, consider first being tested for MGUS or monoclonal gammopathy. A high percentage of those who are MGUS+, at a later date, come down with Multiple Myeloma (bone cancer), which is very rare. A higher percentage than would be expected of those with silicone implants and/or silicone injections are reported to be testing positive for MGUS. On the positive note, Dr. Miller told me that three women who had tested positive, at a later date, tested negative after explant. This is similar to women with Scleroderma having a total remission after explant which has occurred (and is unheard of)! Dr. Miller at the FDA says the more sensitive test for MGUS is Immunofixation Electrophoresis rather than serum protein electrophoresis. Smith Kline can test for monoclonal gammopathy by this process. Smith Kline quoted a "ball park" cost of $115. Immunosciences Labs tests for MGUS by immunofixation electrophoresis and charges $75. You must pay for overnight delivery (they are in Caifornia) of $10 to $12 to send the blood sample to them. Immunosciences Labs (800) 950-4686. will send you the kit to take to your doctor for this test and will give you a receipt to turn into your insurance company and might take Medicare. Ask your doctor to order this exact test and have your insurance carrier pay for it with little or no out-of-pocket expense on your part. Many who are in HMO's will probably encounter a reluctance to do so. Ask your primary care doctor. Make sure you do the proper test! If you prove to be MGUS+ or have Multiple Myeloma, e-mali: MILLERF@cber.fda.gov or write to Dr. Miller at the FDA to join his study group. Please include in your post your phone number so he can call you! You are paid to participate, they pay for all tests (once it has been documented you are already positive) plus pay your doctor. Also, this study could help your case! Many attorneys enthusiastically endorse your participation. Dr. Miller is also seeking those who developed Scleroderma and/or any form of Myositis after receiving a silicone implant and/or silicone injections. Dr. Miller is a sweetheart. He deserves our 100% support. Do not rush to settle; think about it very carefully. Consider being tested for MGUS first, if you are seriously considering it! For further information please contact:: Frederick W. Miller, M.D., Ph.D., Laboratory of Molecular & Developmental Immunology, BER, FDA Building 29B, Room 2G11, HFM-561, Bethesda, MD 20892 Phone: (301) 827-0659; Fax: (301) 827-0852; (From Barbara Stock) You might also contact Marge Lensgraf at: MALLEN@webtv.net for the advantages of joining one of his studies. She is MGUS+ and a member of that study will follow up with each woman. Dr. Miller works day and night on this, so will see women in the evening if necessary. The women are paid $50 to participate (a little Mad Money), their doctors are paid, all tests are paid for plus they freeze some of the blood for the long-term future.

2/10/98, Washington Post: In May, Swedish doctors writing in the Lancet medical journal said astemizole and another antihistamine, loratadine, showed markedly high rates of sudden cardiac death and other severe reactions. The drugs are alternatives to terfenadine, which was the first prescription antihistamine to relieve hay fever symptoms without causing drowsiness. But its use is now restricted because of safety concerns. The FDA has proposed removing terfenadine from the market.

1/6/98, LOS ANGELES, (PR), A new study in today's British Medical Journal does not bring anything new to the debate over silicone breast implants. In examining silicone breast implants for a link to disease, Swedish researchers only included women who had been hospitalized for classical connective tissue diseases. Experts assert that any valuable study should include the atypical or rare diseases prevalent in implanted women.

Following are flaws even the authors acknowledge: The study had limited power to detect the rare diseases most often associated with implants, like scleroderma. "Only women hospitalized for classical connective tissue diseases were evaluated, thus any woman seen on an outpatient basis would be overlooked. "This is still one more study driven by the manufacturers in hopes of absolving their wretched silicone breast implants," says Dr. Robert Garry of Tulane University. "Studies must include atypical disease, otherwise the conclusions are moot," he adds. Women with atypical disease from silicone exposure show a unique set of symptoms, including chronic fatigue, debilitating joint pain and neurological problems. At one time, manufacturers disputed that implants leak, rupture, and spread silicone throughout the body. However, it has been repeatedly proven that silicone implants leak silicone, that 95% of implants will rupture over time and that silicone spreads through the body and has been found in key organs, including the liver and lymph nodes.

"Silicone implants have never been proven safe. Flawed studies like this one are no challenge to the growing body of evidence that shows implants are anything but safe," says Sybil Niden Goldrich, co-founder of Command Trust Network. The study was funded by Dow Corning. "This is typical of biased corporate research. Dow funds studies to look only at classical disease and not the bigger problem of atypical disease. This is part of Dow's corporate funding campaign to create results that don't reflect the true medical problems from silicone."

Feb. 8, 1998, Denver Post, Robert Gehrke, (AP): Caffeine fingered in cell disorder: BYU (SLC) research shows drug may aid cancer. A study by a Brigham Young University researcher indicates that caffeine can extend the life of damaged cells that could potentially become cancerous. The research, conducted by BYU researchef Kim O'Neill, suggests that caffeine impairs the 'apoptotic mechanism', the cell's impulse to die when its DNA has been altered before the cell can replicate. "If you had, for example, a damaged precancerous cell and the cell is saying, 'I've got to die, I've got to die,' and you stop the method by which it can die, then there's a chance that the cell will become cancerous." said O'Neill.

O'Neill points out that his study does not show that caffeine directly causes cancer. A lot of people would like us to draw the conclusion that caffeine is terrible. That's not the conclusion. It's basically that caffeine inhibits cell death." For his test, O'Neill dosed leukemia cells with caffeine and used a heat shock procedure designed to induce cell death. However, the caffeinated cancer cells refues to die while cells without caffeine died as expected. The exact way caffeine impairs the cell death is not clear. There are early indications that some other cells and some other chemicals produce similar results. "By adding caffeine to the medium, you prevent the death of cancer cells and therefore give them protection against this programmed cell death," said O'Neill. "Since they appear unaffected by the heat shock the cancerous cells can continue to replicate." He has done research at BYU since 1992. International Journal Cancer Letters, 12/97.

12/31/97, Gaithersburg, MD, (Business Wire): First U.S. Gene-based Cancer Recurrence Indicator: Requires No Extra Exam or Surgery: Oncor Inc. (AMEX:ONC) announced that the U.S. Food and Drug administration (FDA) has approved the new Oncor INFORM(TM) HER-2/neu breast cancer test. This is the first time the FDA has approved a gene-based test for prediction of cancer recurrence. Oncor will shortly begin manufacturing & marketing the INFORM(TM) HER-2/neu test. According to the American Cancer Society, breast cancer is the most common form of cancer among women, with more than 180,000 cases found in the United States each year. While two-thirds of patients are initially told that the cancer has not spread, more than 40,000 women annually will find that the cancer has come back, usually in a more aggressive, fast-spreading form. The challenge is for the oncologist and patient to take all available information about the patient's disease and identify customized therapy that will be most effective.

Using the readily available original breast cancer tissue sample, the Oncor INFORM(TM) HER-2/neu test identifies the presence or absence of increased copies of the HER-2/neu gene. This indicates whether or not breast cancer is likely to return. This information could help the 40,000 women each year who face a high risk for recurrence get a head start in determining how they will deal with the disease. In clinical trials, 31 percent of patients with originally localized breast cancer that had a positive HER-2/neu test died within five years of surgery, while 97 percent of patients with negative test results survived at least five years. Conventional detection procedures must wait until the disease recurrence is present, allowing the cancer to advance before treatment begins. "If you're born today, your chances of getting cancer in your lifetime are one in three," said Stephen Turner, chief executive officer of Oncor. "That means that cancer is a health problem that statistically every American family is going to have to deal with. All of us share a need for new technology that is going to define the exact, molecular basis for this cancer, and therefore bring in new types of treatment." The Oncor test is not limited to newly found breast cancer. Because the test is applied directly to breast cancer cells, cancer survivors can ask their doctors to perform the test on the paper-thin tissue samples that are often kept on record, even if the tissue samples are many years old. In virtually all instances, the HER-2/neu test can be conducted without the patient going to the doctor's office for an additional examination or surgery.

"Cancer genetics is an exploding area in clinical research," said Jeffrey S. Ross, M.D., chairman, Department of Pathology, Albany (N.Y.) Medical Center, who participated in the clinical trials for the Oncor test. "The amplification of the HER-2/neu gene predicted which women would have a higher risk of relapse and which women were more likely to die of the disease. The HER-2/neu test is designed to provide additional information to the patient and her oncologist. That is why Oncor calls the test the INFORM(TM) HER-2/neu gene detection system."

Oncor CEO Turner added, "The INFORM(TM) HER-2/neu test is the first of what we believe will be many molecular tests from Oncor to help provide more information to doctors and patients, enabling them to make more knowledgeable decisions when deciding treatment options for cancer. "This is a very gratifying day, one which marks the beginning of a new era of molecular medicine. The hard work of FDA personnel, the dedication and commitment of the entire Oncor team and the support of our shareholders have combined to produce a powerful new medical technology. The lives of our wives, daughters and grandchildren will be better because of this FDA approval." Oncor Inc. (http://www.oncor.com) develops, manufactures and markets gene-based test systems and related products for use in the detection and management of cancer and other human disease. This press release contains statements of a forward-looking nature regarding future events. These statements are only predictions and actual events may differ materially. Please refer to documents that Oncor files from time to time with the SEC (Securities and Exchange Commission) for a discussion of certain factors that could cause actual results to differ materially from those contained in the forward-looking statements.

1/27/98, NY (Reuters) Mutant "Itch" Gene May Cause Inflammation: Mutation in a single gene, provisionally called "Itch" by researchers, may result in protein buildup in cells leading to autoimmune reactions and inflammation, according to US researchers. The discovery may point the way to new anti-inflammatory drugs for human allergies and other disorders, possibly including inflammatory disorders affecting the joints, skin and internal organs, including the intestinal tract. The "Itch" gene, reported in the February issue of Nature Genetics, was found in a strain of mice that carry the genetic mutation. These mice suffer from severe itch and inflammation of internal organs, including the intestines. In their report, researchers from the National Cancer Institute, Frederick Cancer Research and Development Center in Frederick, MD, say the discovery involves a single gene responsible for producing ubiquitin E3 ligase, an enzyme normally involved in breaking down proteins. But when the function of that gene is disrupted by a mutation in its DNA, the enzyme is not produced.

"We believe this leaves an excess of proteins in cells, but we don't know that for sure," says study senior author Dr. Neal Copeland. However, the researcher proposes that this excess, if it exists, eventually triggers inflammation and leads the immune system to launch an attack against its own tissue, otherwise known as an autoimmune reaction. Thus, the protein excess may account for the itchiness and other troubles observed in the itchy mice. It may also help explain the molecular cause of inflammation and itch in people. Exactly what the proteins are that trigger the itchy condition in the mutant mice remain unclear. "That's one of the key things we'd like to know," Copeland says. Source: Nature Genetics (1998;18:143-146).

MEDICAL & ALTERNATIVE MEDICIAL: Multiple Chemical Sensitivities: (MCS): Multiple chemical sensitivity is an ailment, or a family of ailments, that has very real consequences for tens of millions of Americans. In various large surveys 15% to 30% of Americans (37 to 75 million people) report that they are unusually sensitive or allergic to certain common chemicals such as detergents, perfumes, solvents, pharmaceuticals, pesticides, foods, or even the smell of dry-cleaned clothes. An estimated 5% (13 million people) have been diagnosed by a physician as being especially sensitive. Many of these people react so strongly that they can become disabled from very low exposures to common substances. Typical symptoms include prolonged fatigue, memory difficulties, dizziness, lightheadedness, difficulty concentrating, depression, feeling spacey or groggy, loss of motivation, feeling tense or nervous, shortness of breath, irritability, muscle aches, joint pain, headaches, head fullness or pressure, chest pains, difficulty focusing eyes, nausea, and more. This group of symptoms is known as environmental illness or, more commonly, MCS, meaning "sensitivity to many chemicals."

MCS has been recognized by its symptoms for 50 years because MCS sufferers in many geographical areas, researchers studying them, and doctors treating them, have reported a remarkably consistent picture of disease. However, because MCS sufferers react to chemicals at levels that are hundreds or thousands of times lower than allowable occupational exposures, traditional toxicology dictates that their symptoms cannot be caused by chemical exposures. Nor is MCS a true allergy because there are no IgE-mediated reactions involved, so allergists don't know what to make of it.

Here's a recent document against MCS: "Multiple chemical sensitivities is a dangerous diagnosis," begins an editorial by Ronald E. Gots (in the March 1995 Journal of Toxicology). Gots is executive director of Environmental Sensitivities Research Institute in Rockville, MD, clearinghouse for scientific data. He continues: "Unlike many 'alternative medical practices,' the diagnosis of MCS begins a downward spiral of fruitless treatments culminating in withdrawal from society and condemning the sufferer to a life of misery and disability. This is a phenomenon in which the diagnosis is far more disabling than the symptoms." Mainstream medical science agrees with Gots. But many Americans beg to differ, because they're convinced they have the disease. To them, the symptoms of MCS are all too real and an MCS diagnosis simply tells it like it is. And even the most cynical observer has to admit that many of these people are suffering terribly. They often bounce from doctor to doctor, seeing as many as 24 in a year because nobody seems able to treat them or to take their complaints seriously. (Only 400 or so U.S. doctors, entitled "clinical ecologists" or "environmental physicians," treat MCS.) MCS patients sometimes have scores of complaints. They give up much of what most Americans consider the necessities of life. Sometimes they feel forced to move away from friends and family in search of a "safer community."

People who claim to suffer from MCS are receiving not just sympathy but official recognition and legal privileges. In 1992, HUD, the Department of Housing & Urban Development said people with MCS can seek protection under federal housing discrimination laws. In one lawsuit, a Virginia housing development agreed to stop using pesticides near the home of a woman who claimed to be chemically sensitive. MCS advocates argue that the case should set a precedent for lawsuits in the workplace as well. Many federal agencies, including the Social Security Administration, the Department of Education, the Environmental Protection Agency, the Food and Drug Administration and the Occupational Health and Safety Administration have issued policy statements to help staff members deal with citizens' MCS claims. The Social Security Administration will now make disability payments to people who can demonstrate to the government's satisfaction that they have been incapacitated by MCS. HUD provided $1.2 million to build an Ecology House for MCS sufferers in Marin County as part of a program intended to "support housing for people with disabilities." Many journalists have been credulous as well, to judge from articles with titles such as "Sick of Work: Chemical Poisons at the Office Can Put You at Risk" (Calgary Herald), "When Life is Toxic" (The NY Times), "Environmental Illness: The New Plague" (Utne Reader), "Why You May Be Allergic to Your Home" (McCall's) and "Allergic to the 20th Century" (Health).

So who's right? Are MCS sufferers really sick? Or is what has been called "the ultimate 20th century illness" really one of the great hoaxes of the 20th century? Could it be both? The idea of MCS has a certain intuitive appeal to anyone who is familiar with allergies. But both the causes and effects of MCS are said to be much broader. People who believe MCS is real generally describe it as a breakdown of the immune or nervous system caused by an overload of offending agents. Often a single agent is cited as the proverbial back-breaking straw. The agents blamed for MCS are not always chemicals (electromagnetic fields are often mentioned), which is why many prefer the term "ecological illness" to MCS. Other names include "chemical hypersensitivity," "environmental hypersensitivity," "total allergy syndrome," "cerebral allergy," "chemical AIDS," and "20th Century Disease." In February a World Health Organization (WHO) workshop in Berlin concluded that MCS should be called "idiopathic environmental intolerances," with idiopathic defined as "self-originated" or "of unknown causation."

Most medical authorities have another name for it: hogwash. Here are a few of their views:

American Academy of Allergy and Immunology, 1986: "Review of the clinical ecology literature provides inadequate support for the beliefs and practices of clinical ecology. Diagnoses and treatments involve procedures of no proven efficacy." The American College of Physicians, 1989: "The existence of an environmental illness as presented in clinical ecology theory must be questioned because of the lack of clinical definition." There is "inadequate support" for the basic beliefs of clinical ecology. American Medical Association Council on Scientific Affairs, 1992: "No scientific evidence supports the contention that MCS is a significant cause of disease or that the diagnostic tests and the treatments used have any therapeutic value. Multiple chemical sensitivity should not be considered a recognized clinical syndrome." WHO Workshop on MCS, 1996 (summarized by Gots, who participated): MCS "cannot be recognized as a clinically-defined disease. There are neither accepted underlying mechanisms nor validated clinical criteria for diagnosis. A relationship between exposures and symptoms is unproven."

Defenders of the MCS concept sometimes assert, without offering evidence, that the syndrome is getting more recognition. In her 1989 Utne Reader article, Lynette Lamb declared, "The National Institutes of Health, MIT, Yale and Johns Hopkins University are among recent converts to the existence of MCS." Yet schools don't even have a mechanism for "converting" to a position. What Lamb should have said is that at least one professor (out of hundreds) at those schools accepts MCS. As for the NIH, it has never convened a panel nor issued a position paper nor weighed in any way on the existence of MCS.

Official authorities proclaim the existence of MCS so rarely that when they do they are eagerly quoted by the media. Thus many newspapers and magazines gave favorable coverage to the New Jersey Department of Health's 1989 report on MCS, which said MCS "is widespread in nature and is not limited to what some observers would describe as malingering workers, hysterical housewives and workers experiencing psychogenic illness. Chemical sensitivity is increasing and could become a large problem with significant economic consequences related to the disablement of productive members of society."

The Washington Post, the San Francisco Chronicle, The New York Times Magazine, and the environmentalist E magazine reported these conclusions without telling their readers the background of the two individuals who prepared the report. One was MIT chemist and lawyer Nicholas A. Ashford, who for decades has been an environmental activist focusing on harms caused by chemical exposures. In 1980 he was kicked off an EPA advisory board because of his perceived leftist activities. The other was University of Texas at San Antonio allergist and immunologist Claudia S. Miller who makes her living in part by treating MCS patients and who co-wrote a book on the subject with Ashford: Chemical Exposures: Low Levels and High Stakes. Miller has argued the existence of MCS since at least 1978 and continues to be frequently quoted on the subject. She also advocates recognition of the controversial Gulf War Syndrome. In short, Ashford and Miller's judgment that MCS is a real and pressing problem is about as newsworthy as Pope John Paul's position on abortion.

In the battle of authorities, those who accept MCS as a bonafide disease are the clear losers. But authorities have been wrong before on scientific issues. Let's look at the evidence. The traditional definition of organic disease would lead us to expect a fairly narrow range of symptoms, of causes, and of treatments (if any). Furthermore, there should be biological tests to confirm the disease. All tuberculosis, for example, is caused by Mycobacterium tuberculosis or a related germ, Mycobacterium bovis. The symptoms of active tuberculosis can vary somewhat from patient to patient but typically include coughing up blood and labored breathing, along with perhaps a couple of other problems. The disease is transmitted through contact with another individual. The causative germ can be seen under a microscope and it can be killed with antibiotics. AIDS is an apparent exception to the narrow-range-of-symptoms rule but that's because it drops the immune system's shields, allowing any number of opportunistic infections to flourish. And even here a handful of symptoms appear regularly in most victims.

But with MCS, as one Internet writer who believes in the condition put it, "the illness can cause all the symptoms of every disease or disorder known in psychology, psychiatry, and the general medical profession." Indeed, a paper provided by the Chemical Injury Information Network of White Sulphur Springs, Montana, lists more than 100 symptoms that may result from MCS, including sneezing, itching, twitching, numbness, difficulty swallowing, hoarseness, earache, chest pain, easy bruising, high or low blood pressure, sore muscles, cramps, eczema, "heavy eyes," blurred vision, dyslexia, frequent urination, genital itching, PMS, backache, nausea, belching, constipation, hunger, thirst, headaches, apathy, forgetfulness, insomnia, IQ drop, depression, bitter or sweet slime in mouth, heat sensitivity, cold sensitivity, stiffness, swelling, neck pain, anxiety attacks, agitation,

liver pain, hair loss, premature gray hair, brain fog, and genital sweating. A note at the bottom of the page adds: "Unfortunately this is not a complete list of symptoms." If you haven't suffered at least a dozen of the listed symptoms in the past year, you're probably an android.

If the sky is the limit on the symptoms of MCS sufferers, what about causes? Here, too, anything and everything. The most common include formaldehyde (found in furniture glue, particle board, and synthetic carpeting, etc.), pesticides, solvents, acrylic resins, mercury compounds, polyester, latex, gasoline, glues, paints, detergents and other cleaners, tobacco smoke, newspaper print, perfumes, hair cream, oral contraceptives, dry-cleaning solvents, and bleach. But the etiology of MCS goes beyond synthetic agents. In addition to contaminated air and water, writes Boston Globe environmental reporter Nicholas Tate in his book, The Sick Building Syndrome, MCS can be caused by "viruses, molds, bacteria, pollens."

"It gets a little bit trendy in terms of what's the latest fad," says Herman Staudenmayer, a Denver psychologist and MCS skeptic who has assessed and treated several hundred clients complaining of the syndrome since 1980. Lately, he says, the emphasis has been on carpets, formaldehyde, solvents, and pesticides. "Those are the things getting lot of attention, as well as certain cleaning products," he says. But "there's no exclusion and this is important. There's no chemical that is safe. There's no food that is safe." Explaining how MCS causes become "trendy," Gots says, "Support groups are contagious. They tell everybody what all the things are that give them symptoms and that's a contagious thing to do."

So it seems that practically anything can cause MCS and that practically any symptom can be the result of MCS. But what about treatments? It is not uncommon in medicine to be diagnosed by your treatment. The doctor suspects you have a certain illness and gives you medicine for it. If the medicine works, he was probably right. Can we define MCS by a common successful treatment? No, because MCS is not considered a curable disease and the treatments are as diverse as the symptoms and causes.

One clinical ecologist, Sherry Rogers of Syracuse, NY, has prescribed a macrobiotic diet for MCS based on grains and vegetables & free of wheat and dairy products. Rogers says it works by detoxifying the body, especially critical in today's toxin-ridden world. Another clinical ecologist, Joseph Weissman, who has a practice in Torrance, CA, reportedly agrees with the macrobiotic diet but also recommends avoiding tap water, caffeine, and alcohol. He tells MCS sufferers to rid their homes of toxic chemicals such as cleaners & pesticides, improve the ventilation system and avoid all drugs, whether prescription or over the counter.

A favorite MCS treatment is saunas, which supposedly "sweat out toxins." One correspondent in an Internet news group said the government ought to provide all MCS sufferers with a sauna. They would probably like that (who wouldn't?), but you can't sweat out a toxin because the sweat glands aren't connected to any of the organs that process toxins. (what about the skin?) And no, saunas don't help you lose fat either. Other treatments include coffee enemas, something called "salt-eutralization therapy," (IgG) gamma globulin, interferon, vitamins, and ginseng.

People with "Multiple Chemical sensitivity" are definitely suffering: A common treatment for MCS is simple avoidance. This can be mild, as in avoiding, say, formaldehyde or solvents. But sometimes it means making yourself a prisoner in your own home, living in a small porcelain house (porcelain being one of the few materials said to be safe for MCS sufferers), or, in extreme cases, moving away from civilization. One favorite refuge is the small scorpion and fire ant-infested town of Wimberly, Texas, an hour's drive from San Antonio. MCS patients are often referred there by Gerald Ross and William Rea, physicians at the Environmental Health Center in Dallas. In Wimberly can be found a woman who hangs her mail on a clothesline for weeks before reading it to allow the toxins in the ink to dissipate. Another woman tried living in a six-by-nine-foot porcelain hut but now just spends almost all her time on her porch, no matter how cold it gets. Yet another wears a protective mask while shopping but still develops breathlessness, palpitations and vomiting when she smells gasoline fumes.

If most of the these treatments seem to have a voodoo quality about them, that's because, as with voodoo rituals, many people swear by them, but there's no science to back them up. As the Berlin WHO workshop concluded, MCS treatment has not been validated in controlled clinical trials. The final criterion for disease, along with symptoms, causes, and treatments, is whether it can be detected with a test. Clinical ecologists and their supporters sometimes turn this requirement on its head, saying that if tests for all ot her types of disease come up negative, then the sufferer must have MCS. Clearly, that's unsatisfactory. It's like a doctor announcing that some skin cancers are caused by energy waves from UFOs: If no other cause of the skin cancer (such as sunburn) can be found, then it must be a UFO-related illness. Impossible to prove, yes, but also impossible to disprove. That's the beauty of an MCS diagnosis and MCS in general. It's what logicians call a nonfalsifiable argument.

So is there an objective, clinical way of telling whether your twitching, headaches, and graying hair are MCS or just, well, twitching, headaches, and graying hair? Doctors with MCS practices use various tests. Grace Ziem, a Baltimore occupational medicine therapist who has about 200 MCS complainants under her care, seems to rely heavily on questionnaires and interviews, but she says she also does some laboratory testing, such as neuroimaging. The problem is that objective scientific tests can be interpreted subjectively. Ziem grants the possibility that some patients simply have psychosomatic illness. "If their lab results are negative," she says, "it looks like more of a personality thing." But somehow her tests are never negative. "I don't remember having someone who is just having a psychological reaction," she says. "Some people do, but in our experience we're not finding it." The most commonly used test for MCS is probably provocation-neutralization, in which subjects are given a tiny dose of various agents and questioned about how they feel. (This procedure is much more subjective than a conventional allergy test, in which a substance is injected just below the skin, and a positive result is indicated by redness and swelling.) Once an offending agent has been identified, the clinical ecologist injects it in various rising concentrations until a "neutralizing dose" is found. The problem with such testing is obvious. If MCS is brought on by suggestion, this procedure will not eliminate that possibility. (Aren't these guys pessimists, and not well educated about MCS, to boot!!??)

A young woman convinced she's sensitive to Pierre Cardin cologne will get sick when you tell her you are now exposing her to Pierre Cardin. In 1990 this test was put to the test. The study, which followed a protocol considered fair by both advocates and detractors of MCS, was financed by two clinical ecology organizations, the Academy of Otolaryngic Allergy and the American Academy of Environmental Medicine. Seven experienced clinical ecologists used their own food extracts in their own offices with their own patients. They gave 18 patients injections, some of which contained test substances and some of which contained saline as a placebo. The study was double-blind, meaning neither doctor nor patient knew who was getting what. The results, reported in the August 16, 1990, New England Journal of Medicine, were not to the liking of the people who paid for them. The subjects reported the same number of symptoms whether they received test agents or saline solution. Furthermore, "neutralizing" doses of the food extracts and the placebo were equally likely to p rovide relief. (Ever wonder about the silicone in the syringes??)

The chief researcher for this project was Don L. Jewett, an orthopedic surgeon at U of C at San Francisco. He told a reporter he was surprised by the study's negative findings. "I believed it was going to be positive," he said. "I looked at it every way I could think of. It's just completely consistent with randomness. And that's the only thing it's consistent with." Jewett said that at one time he had been very much a believer, having been treated by a clinical ecologist. Now he's one of clinical ecology's major critics. "I had believed in MCS and when we did the experiment we expected it would turn out positive. We designed it carefully to convince any skeptics. So when it didn't work out it clearly showed the methods they [clinical ecologists] were using at that time did not work as claimed. Their basis was the doctor's impressions and I believe that's all they still use. It's not science."

By all traditional standards of illness, symptoms, causes, treatments, and tests, MCS comes up wanting. "Most physicians would agree that there are chemical sensitivities," says Staudenmayer, the Denver psychologist. "I believe there are. We have found them in toxicology and in industrial medicine. So you have a legitimate basis of toxic evidence." But he emphasizes that it's one thing to be sensitive to a certain chemical, quite another to say that a sensitivity can somehow overwhelm the immune system, causing broad vulnerability to illness.

So what's causing all these strange maladies? In a study reported in The Journal of the American Medical Association in 1990, University of Iowa psychiatrist Donald Black and his colleagues tried to find out. Black discovered that patients who had been diagnosed by clinical ecologists as having MCS were far more likely than other people to have psychological problems such as depression, anxiety disorders, and panic attacks. "It's my belief," he said at the time, "that people diagnosed as having environmental illness in most cases do have something wrong: a garden-variety emotional disorder." Don Jewett agrees: "My basic underlying theory is that these patients are very stressed. Almost all have very unsatisfactory lives."

Stephen Barrett, a retired Allentown, Pennsylvania, psychiatrist and author of The Health Robbers: A Close Look at Quackery in America, notes that the symptoms most commonly exhibited by MCS sufferers "have to do with the body's reaction to stress. That means you're going to get a lot more complaints of insomnia and headaches than of nose bleeds." Adds Staudenmayer, "These patients sort of live their belief. They believe their illness is caused by factors external to themselves so they project problems or cause of problems onto the physical environment." But couldn't it be that suffering for years from untreated MCS leads to the psychological disorders, rather than the other way around? No, says Black. "In many, if not most, of the cases," he explains, "their psychiatric history long predates any chemical exposure the clinical ecologist thinks is causing their problem." One woman he saw had hospital records of psychosomatic problems dating back to the 1930's, though her MCS diagnosis had been made just 10 years earlier. "We have that kind of history on a number of patients," he says. Furthermore, "a lot of these people have psychiatric problems that you wouldn't expect to see if it were just a reaction to chronic illness, such as panic attacks and somatizations" (turning psychological stress into physical symptoms). The kinds of mental illness you'd be more likely to see if this were a response to chronic demoralization, he says, are depression, mild anxiety and marital discord.

Doctors who treat MCS patients, like Ziem, seem rarely if ever to find that their patients have psychological problems. In the mid-1980s Canadian researchers preparing a report on MCS for the Ontario Ministry of Health looked through the files of the most prominent clinical ecologist, William Rea of the Environmental Health Center in Dallas. They found that only four out of 2,000 of Rea's patients had tested negative for environmental sensitivity and those four were found to have cancer. The reviewers said Rea used "no appropriate controls and the patients were assumed to have environmental hypersensitivity mainly by being referred to the unit." It strains belief that out of all the hypochondriacs and people with psychosomatic illness out there, none manage to find their way to Rea's clinic.

Likewise, the New York City physician Warren M. Levin testified in court a few years ago that since 1974, when he began practicing clinical ecology, he had diagnosed every patient he saw as suffering from environmental illness. The suit was brought by the estate of a young man who had previously been diagnosed as a paranoid schizophrenic convinced that "foods were out to get him." Levin gave him the usual diagnosis and put him on a restrictive diet and supplements. He continued the treatment for several years until the man's suicide. The jury found Levin negligent and awarded the estate $900,000 in damages.

Among the main instigators of the MCS syndrome, say MCS critics, are the clinical ecologists themselves. "They have a significant role in keeping these people sick," says Gots. "They tell them they're poisoned, and if you're told you're being poisoned you believe you're being poisoned. I've seen hundreds of patients like this." Black, the University of Iowa psychiatrist, says "people who receive this label of MCS are psychologically vulnerable. They tend to be suggestible individuals. Many have physical complaints of unknown origin and shop from doctor to doctor and are just delighted when a clinical ecologist gives them an explanation for years and years of ailments."

It has long been understood that suggestion can be very powerful in both curing and causing illness, but historically the emphasis has been on the positive side. The negative side is called a nocebo. It shows up regularly in tests in which one group is given a real drug and another a fake drug as a control. For example, in one study of the antidepressant Prozac, 15 percent of the subjects claimed to have gotten headaches even though it turned out they were receiving a placebo. We've probably all suffered the nocebo effect, developing symptoms in response to somebody else's symptoms or upon receiving a diagnosis of illness.

The fact that a person's illness is psychosomatic doesn't mean the person isn't really suffering. A headache is a headache, whether it was caused by a blow to the head or because you smell cleaning solvent and are convinced cleaning solvent smells make you ill. Your head hurts just the same. I know this from personal experience. During my first year in the Army I began breaking out in terrible hives. Whole parts of my body, including hands, feet and lips, would swell up. My face was covered with huge red welts. I felt like throwing a hood over my head and proclaiming to gawkers: "I .AM.A MAN!" This continued on and off for several horrible weeks. No allergen could be found. Then one day a savvy soldier told me, "You're allergic to the color green." Well put and well diagnosed. Long before I began writing for libertarian magazines I had come to hate the authoritarianism of the Army. I was unwilling to desert, unable to resign. My body burst out because I could not. Fortunately, the cure for my hives came in understanding the cause, and soon they were gone, though it took more than three years to eliminate the "causative agent."

Anxiety-induced illnesses are so common one wonders if there aren't other pseudo-illnesses stalking the land. Absolutely, says Gots. "Gulf War Syndrome is not particularly different from this," he says. "Neither are the breast implant complaints. I see a lot of those." Those familiar with the role that litigation has played in the silicone implant controversy will wonder about that side of MCS. Some insurers and defendants attorneys are convinced that the threat from MCS suits is huge. So are trial lawyers. In 1987, the Association of Trial Lawyers of America voted to establish a clearinghouse on ecological illness and its legal aspects. In addition to personal injury lawsuits, MCS gives rise to worker's compensation and Social Security disability claims.

In a nice twist, the Environmental Protection Agency, whose noncommittal position on MCS has allowed backers to claim the agency is on their side, was sued in 1990 by employees at its Washington, D.C., headquarters who claimed that their new building had given them MCS. In 1993, the jury awarded five employees a total of about $1 million but the D.C. Superior Court later threw out the verdict and granted a judgment in favor of the EPA. (Reason Magazine). (Is it any wonder no one believes us, with this garbage floating around out there?? Lynda)

PERSONAL COMMUNICATION: As you read this, I am at my sister's home in Hawaii (Kona side of the Big Island). I take a trip once a year to relax and enjoy the beauty of nature and enjoy my sister's company. I will return on the 13th of March. I will not be available by phone, fax or e-mail (or regular mail) until the middle of March. I plan to snorkel, walk on beaches, enjoy the plumeria and the beauthful flowers and come back rejuvenated and relaxed. My divorce is just now final and I am finding that I have become my old self since I have so much less stress in my life. I hope you are all doing well. Lynda

THIS MONTH'S POEM:

THINK OF THOSE WHO LOVE YOU

If someone should hurt you

and say a thing unkind,

Remember that I write you,

and keep these thoughts in mind.

For everyone that makes you cry,

there are three who make you smile,

And a smile will last a long, long time,

but a tear just a little while.

Don't let someone who hates the world

cause you to hate it too.

Behind the clouds is a golden sun,

and a sky that's full of blue.

If someone said a thing that's cruel,

don't let it get to you,

Your achievements are greatly numbered,

and your faults are very few.

So if a certain person

should act a certain way,

Think of those who love you.

And don't let it spoil your day.

Don't know the author, but I heartily agree with the sentiments!!

THE OPINIONS EXPRESSED IN THIS NEWSLETTER ARE THOSE OF THE EDITOR AND ANY CONTRIBUTORS AND ARE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. ANY ARTICLES OR INFORMATION SUBMITTED MAY BE EDITED BECAUSE OF SPACE, CONTENT OR GRAMMATICAL ERRORS.

LYNDA ROTH, EDITOR

PREVIOUS NEWSLETTER INFORMATION: Previous issues of newsletters available: $2 each U.S., $3 Foreign. 1/93 is the first available issue. Please indicate months' desired and proper sums. Some covered subjects: Auto-immune 1/93; Fibromyalgia 2/93; Medical Testing 3/93; Sjogren's 4/93; Vasculitis 4/93; Arthritis 5/93; Chronic Fatigue 6/93; Lupus 7/93; Irritable Bowel Syndrome & Inflammatory Bowel Disease 8/93; Insurance 8/93, 9/93; Misc. Med. Info. 9/93; Multiple Sclerosis 10/93; Spasmodic Torticollis 10/93; Hypoglycemia 11/93; Antibodies 12/93; Reflex Sympathetic Dystrophy 1/94; Misc. Med. Info. II 2/94; Scleroderma 3/94; Costochondritis 4/94; Peripheral Neuropathy 4/94; Class Action 5/94; Fungal Infections 6/94; Hypercalcemia (low calcium) 7/94; Raynaud's Phenomenon 8/94; Fibromyalgia Update 9/94; Sarcoidosis 10/94; Free Radicals 11/94; Porphyria 12/94; Interstitial Cystitis 1/95; Mixed Connective Tissue Disease 2/95; Flap Procedures 3/95; Misc. Med. 4/95; Thyroid Disease 5/95; Stress 6/95; Natural Healing 7/95; Adrenal Malfunctions 8/95; Multiple Myeloma 9/95; DHEA 10/95; Chelation Therapy 11/95; Sleep Disorders 12/95; Meniere's Disease 1/96; 33 Tips to Improve Your Health 2/96; Amino Acids 3/96; Enzymes 4/96; Minerals 5/96; Aluminum Toxicity, DHEA Update 6/96; Addictions & Food Sensitivities 7/96; Misc. Med. Info. IV 8/96; Misc. Med. Info. V 9/96; Misc. Med. Info. VI 10/96; Misc. Med. Info. VII 11/96; Transcient Ischemic Attacks 12/96; Symptoms of Breast Implant Problems 1/97; Pap Tests 2/97; Parasitic Infections 3/97; B-Complex Deficiency Syndrome 4/97; Myofascial Pain Syndrome 5/97; Inositol 6/97; Misc. Med. Info. VIII 7/97; High Blood Pressure 8/97; Plaquenil 9/97; Misc. Med. Info. IX 10/97; Misc. Med. Info. X 11/97; Gastroesophageal or acid reflux 12/97; Smoking Dangers 1/98; Misc. Med. XI 2/98; Legal info. and info. on Alternative Medicine Info. contained in most issues.

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