Campaign for Safe Cosmetics

There is another worthy organization I should mention while I'm on this kick about things with which you lather, paint, spray, scent, and goop yourself. The Campaign for Safe Cosmetics announced last week that they had reached a benchmark. Five hundred companies have now signed onto their "Compact for Safe Cosmetics." By doing so, these manufacturers have pledged "to replace ingredients linked to cancer, birth defects, hormone disruption and other negative health effects within three years."

I have to say, the names of the signers don't sound like the product choices of either ruthless beauty queens or average Americans. The brands tend to have a whimsical, pagan flavor. I ran across Carrot Tree, Cosmic Tree, Cosmic Dance, Earth Dance, and Dancing Dingo. My cuteness award goes to Munchskins Skin Care. I'm too far out of the mainstream to be much judge, but I thought the participating companies with the greatest name recognition were probably The Body Shop and Dr. Bronner's. The Campaign's website notes that "OPI, Avon, Estee Lauder, L'Oreal, Revlon, Proctor & Gamble and Unilever have thus far refused to sign the Compact for Safe Cosmetics."

With a few keystrokes and mouse clicks you can get active and gently encourage the latest Campaign target, OPI, to do the right thing. The nail polish giant has apparently already been cajoled into lumbering in the right direction.

What is my immediate personal stake in this as someone with Multiple Chemical Sensitivities? I myself don't so much mind tracking down obscure alternative products at the health food store, or paying a little more for them. However, I wish it were easier for an accommodating friend to show up fragrance free for a get together. I don't think most people really want to wear ten differently scented products at once if they stop to think about it. I don't think they want perfume so adhesive they can't wash it out of their clothes if they try--even if they don't know the health risks. It shouldn't require a research project to stop making other people sick by your very presence.

More of Consumer Reports Does Fragrance

I drew ten times my average daily readership yesterday due to Sunday's post. It was about an unsettling Consumer Reports article on cosmetics safety published by AOL. Please, have another helping. My favorite sentence in the report, which alludes to perfumes, reads, "We bought Happy, Poison, and Beautiful in both the U.S. and Europe, and found the E.U.-banned phthalate DEHP in all the samples." Surely the article's author had some fun with word juxtaposition on that turn of phrase. While I admire audacity, I'd suggest Christian Dior, maker of Poison, consider "Young," "Powerful," or "Rich" as more on-message options for a name.

But I'm not really playing to my new-found audience now, am I? The visit counter suggests that my most avid recent reader works for a large firm that produces cosmetics (one with its whole own ISP). Perhaps a bored employee is dropping by, or a chemically-sensitive one, but I'm guessing that someone is actually getting paid to read my little foot-stamping missives from Multiple Chemical Sensitivity land. I don't know whether that's creepy or flattering. It is definitely annoying that being on the right side is so seldom as financially rewarding as being on the wrong. If anyone wants to pay me, please step forward.

Is Your Shampoo Safe?

We do try (don't we?) to remain ever alive to the teeny-weeny area of overlap between fun and Multiple Chemical Sensitivity. Today's recommendation is not quite like a night at Mardi Gras, but check out the interactive data base on cosmetics safety put up on the web by the Environmental Working Group (EWG). It's part of their Skin Deep project, which also sends out a free e-bulletin on request. You can enter the brand name of your shampoo, or your moisturizer, or heaven forbid, your perfume, and see how they rate it for safety.

I figured my body had long since become a finely-tuned instrument for testing cosmetics safety. I thought I wouldn't learn much on this subject from EWG. It's true that the products I use--not that I indulge in many--were in the low-risk category. However, they weren't the lowest of the low and I think I'm going to making some changes. Why not use a lip balm with zero health risk? I think I should be able to safely eat my lip balm if I get it into my head to do so. Why not use a shampoo with seven ingredients, rather than 37? Please, no whining, I'm sure the simpler one will remove dirt and oil from your shining locks just fine. Did the advertising really have you thinking your current one was going to improve your sex life?

Consumer Reports Does Fragrance

Breathing perfume makes me sick--literally, instantly, and routinely. I'm sure I could discuss the subject rationally with fragrance wearers, if they were just amenable to a simple preliminary procedure. "I'll take the mask off in a minute," I'd say. "Hold onto your chairs there, sir, madam." A quick rinse with the old fire hose and let's chat. Oh, yes, I suppose my imagined interlocutors might be more receptive to a familiar, unbiased source of information--and not complain if it was a little dry. I recently ran across just the thing.

On Friday AOL published a Consumer Reports article on the safety of cosmetics. The piece outlines the appalling lack of safety regulation in general, but focuses on a potentially dangerous class of chemicals called phthalates (THAL-ates). These compounds are contained in all manner of products, including perfume and anything with "fragrance" listed as an ingredient. Consumer Reports found phthalates in all of the eight perfumes they analyzed, although none of the labels listed them. This lack of disclosure isn't surprising, as it's not required. However, several companies were revealed to have made false claims either about whether they use phthalates at all or about which ones they use. And, you bet, the fibbers' names were named, specifically Estee Lauder, Clinique, Aveda, Liz Claiborne, and, for shame, Aubrey Organics.

Phthalates are known to cause cancer and liver injury in animals and to cause reproductive and developmental abnormalities in people. They are often used to make other fragrance chemicals linger--I swear, sometimes for years. They are banned in Europe, where regulation is more stringent. Consider that only eight cosmetic ingredients are prohibited in the U.S., while more than 1,000 are forbidden by the E.U. (Not that the Consumer Reports testing suggested that the European law was being followed.) On our side of the Atlantic, "The industry essentially regulates itself," states the article.

So what is our take-home message? Even if you don't have Multiple Chemical Sensitivities, buy fragrance-free products from eco-groovy alternative companies. (Or be on guard for a bracing spritz.)

Help, We Exist

MCS America is launching a petition drive to give a nudge in the right direction to powerful U.S. organizations that should be doing something about Multiple Chemical Sensitivity (MCS). The web-based advocacy group has been publishing a free on-line newsletter since August. Last I knew, the head of the group's board of directors, Lourdes "Sal" Salvador, was spearheading its activities out of the van in which she lives due to her MCS. (Gotta love her.)

With permission, I've copied below the one-sentence petition statement to be delivered to the American Medical Association, the Centers for Disease Control, and the National Institute of Environmental Health Sciences. In my understanding, the group will send out a more detailed letter over the signature of its leaders on the 1st of February and there will be additional opportunities for the rest of us to lend support then.

I hereby petition the AMA, CDC, and NIEHS to support further studies, endorse the full recognition of MCS as a physiological medical condition, and to educate physicians about MCS and environmental illness for the betterment of public health.

To sign the petition send a message with your name, state, and any title/affiliations to:

petition@mcs-america.org

Half a Million Canadians MCS Diagnosed

Statistics Canada released a report Friday estimating that 2.4% of Canadians over age 11 have been diagnosed with Multiple Chemical Sensitivity (MCS). That's about 643,000 souls. The government agency conducted a survey asking participants about MCS, Chronic Fatigue Syndrome, and Fibromyalgia, all classed as diseases with "medically unexplained physical symptoms," or MUPS. Over 5% of the Canadian population, more than a million folks, are believed to have at least one of the three MUPS, with MCS being the most prevalent. Hard to say what the figures really mean when it seems that half the potential diagnosers don't believe in the existence of one or more of the diseases, but onward...

What else did the study purport to tell us about our north-of-the-border comrades with MCS? They are more than twice as likely to be female as male. The middle aged are harder hit than the young or the old. (The grim thought occurs to me that MCS may prevent old age.) Compared to the general population more people with MCS are likely to class themselves as previously rather than currently married. MCS is the most frequent in the lowest income bracket. And, finally, there is a relatively high percentage of self-reported mental illness and dissatisfaction with life among the chemically sensitive.

Careful, now, with those cause-and-effect conclusions (and Statistics Canada was admirably so). Granted, getting MCS isn't going to change your gender--except in truly exceptional circumstances--so I'd say we can safely consider double X chromosomes to be a risk factor for the disease (as long as we assume that men come forward and are diagnosed as readily as women). But consider that MCS could drive you into debt, drive you crazy, and drive off your spouse, or failing that, drive him to the grave. On the other hand, being poor might mean you eat poorly or breathe polluted air and thus are more likely to get sick. Who knows what causes what.

And, don't forget, when two things are found together a third factor may be causal. Being female contributes to the likelihood of both poverty and MCS, and obviously in some ways that aren't related to each other. Or, considering the mental health issue, I'd guess that traumatic stress could soften up your neurons for both MCS and, say, depression. Or all those medications you're taking could prime two pumps. Or all those pesticides you're eating. All that perfume you're breathing. Just speculating.

How do the U.S. and Canada compare in terms of MCS incidence and the number of chemicals circulating in the two countries? State-side studies of MCS prevalence have usually come out with at least slightly higher estimates. One surprising study showed that about 6% of Californians had been diagnosed with MCS and about 16% said they were "allergic or unusually sensitive to everyday chemicals." According to an article in the Toronto newspaper The Globe and Mail, Canada has a mere 35,000 chemicals in common use, while there are over twice that many floating around in the U.S. I'm sorry, these facts are no doubt unrelated, but I couldn't keep myself from pairing them.

Of course the label "medically unexplained" is subtly pejorative and in line with efforts to cast doubt on the legitimacy of the diseases. Many other illnesses have mechanisms that aren't understood and yet the fact isn't included in their names. The MUPS label also says nothing about the real associations and possible common biology of the diseases. But what do I know; I'm just a MUPPETTE (marginalized, unemployed, poor patient entertaining thoughts of toppling the establishment). It's probably best to listen to those pulling the strings, who are PAID-OFF (pompous, arrogant, ignorant doctors offering farcical folderol).

MCS Child on TV News

Check out a video clip of a news story done by a Fox affiliate in New York about a 4-year-old girl with severe Multiple Chemical Sensitivities (MCS) and food allergies. Her parents report that their HMO won't pay for her life-saving treatment with an Environmental Medicine specialist. They have petitioned, complained to, and met with every responsible state and federal agency and official possible--to no avail. Elsewhere on these poor souls' website you can buy greeting cards or donate money if you want to help reduce the staggering debt they've taken on to pay for their daughter's medical care. Y'know, I can often find a sense of gallows humor about my own situation, but I am undone by seeing parents struggling against the system to help their MCS children.

Diplomat from Planet MCS

The Gideons have done well with bibles, but I would really like to have them turn their hand to distributing a video produced by Alison Johnson, chair of The Chemical Sensitivity Foundation, entitled Multiple Chemical Sensitivity: How Chemical Exposures may be Affecting your Health. I saw it yesterday under the impression that it was a new release and thought it was destined to change public perception of MCS. I learned today that it's been out since 1998 and I realized how little anything relating to MCS has changed in at least the last eight years. Not a particle of blame for this stasis can be attached to Alison Johnson or filmmaker Richard Startzman. It can only be that too few people have seen their work. (More recent videos adddress Gulf War Syndrome and the health impacts of 9/11.)

There aren't many things in life with which I can't find some fault, but I'd be hard pressed to criticize one directorial decision in the MCS documentary. It draws the viewer into the lives of a broad spectrum of people with MCS, including professionals, laborers, children, and Gulf War vets. It would be a blind eye and a hard heart that could discount this collection of humanity as a bunch of psychosomatic whiners. I particularly felt for the mother of a 7-year-old as she recounted his long, heart-wrenching, and sometimes-terrifying suffering, her own feelings in check just below the surface as she spoke. I also can't forget a man who had been living in a tent for months, through all weather, seemingly without a dent in his good-natured disposition.

The filmmakers select the most serious, well-spoken doctors and academics to expound on the nature of the disease, its causes, prevalence, etc. No airtime is given to the quacks who cry quackery. The patients' accounts of their experience indirectly suggest the organized cruelty dealt out to those with MCS, along with quotations from medical reports used to deny them disability benefits, and a brief allusion by one doctor to powerful enemies. There is also a poignant moment in which the former owner of a home pesticide company, now himself sick, expresses remorse for dismissing the pleas of a distraught mother for her chemically-sensitive child's safety.

But there is nothing heavy-handed in this film. It gently points to the implications for everyone in the emergence and increasing prevalence of MCS, but it doesn't try to force any particular conclusion. Nor is there any defensiveness in its tone. A viewer naive to the subject wouldn't suspect that everyone involved in the project was shut out of public discourse or under attack in some way or other. It is the perfect vehicle for educating people to the extent they are open to learning. I wish I could give a DVD copy to my doctor, my neighbors, my employers, my landlord, my friends, the neighborhood library, my congresswoman, and my local PBS affiliate. Yes, I'd like a copy of it in every hotel room, or least have it available for free streaming over the web.

CIIN Conference: Move Over Mick Jagger

Attending last week's medical conference on Multiple Chemical Sensitivity (MCS) was, for me, akin to being allowed backstage with a famous rock band. The international conference was held August 4-6 at a hotel near the San Francisco Airport and was organized by Cynthia Wilson of the Chemical Injury Information Network (CIIN). I didn't feel like a groupie when I walked in, but the level of scientific discourse was so thrilling that I was hugging startled researchers in gratitude by the end. Wilson told the assembled doctors and academics they were her "dream team." She told me that gathering them in one place had been like "chasing dust bunnies." She is the Bill Graham of MCS and I congratulate her.

The conference, open to the public, was convened for the purpose of improving on previous medical descriptions of MCS. The hope is that a better "case definition" will bring about recognition of the illness by key governmental bodies, such as the Centers for Disease Control in Atlanta. The legitimacy thus conferred would hopefully, in turn, loosen up some research dollars to direct at better understanding the disease. It would also help bring us sick people out of the twilight zone and back into decent society. It's not Wilson's style to speculate on the chances for success. "If this doesn't work, we'll do something else," she said.

I've been pretty firm in believing my own experience with MCS, but a certain malaise can creep in when the doctors who believe me seem to fall largely in the "fringe" category. I don't dismiss all alternative medicine, but the use of pendulums and "muscle testing" as diagnostic tools depresses me. And I rebel when asked to drink my own pee every morning in some untested "hair of the dog" scheme. I once passed for a serious student of Biology, for God's sake.

So...it was a giddy relief to see for myself that smarty-pants mucky-mucks, with credentials up the wazoo, are hashing it out with each other in rich and lively debate. I was cheered by watching them respectfully disagree over whether the key to MCS lies in the brain, the immune system, detoxification enzymes, or a biochemical cycle of nitric oxide. It was a pleasure to hear their expectations for scientific proof of each others' assertions. And it was especially heartening that none of their various understandings flew in the face of my first-hand experience; they had a feel for the beast.

No radical new directions were evident in the first draft of the case definition produced by a conference workshop. (Anticipating this, some experts believed the project should have awaited further discovery.) "Diminished mental acuity" and "mood alterations" were newly listed as possible symptoms, but were not required to make the diagnosis. Similarly, intolerances for alcohol and pharmaceuticals were named as possible characteristics. Involved arguments about each of the three words in the label "Multiple Chemical Sensitivity" didn't appear to result in a change of nomenclature. Dr. Claudia Miller, a giant in the field, sent a plaintive written plea to refrain, at least, from using the word "sensitivity." It is apparently both owned and ruined forever by foolhardy allergists who will come to rue the day they decided what it meant.

The group knew they were "long on theory and short on data," in the words of Dr. William Meggs. Wilson wisely gave the biggest chunk of uninterrupted air time to a researcher, Dr. Robert Haley, whose focus has not been on MCS, but who has pinned down some hard facts on an overlapping condition, Gulf War Syndrome. He delivered a how-to lesson not only in scientific methodology, but in political moxie for approaching subtle, complex illnesses which go unrecognized in an industry-dominated, anti-scientific climate. An eagle scout from Texas, Dr. Haley sported a crisp suit and tie in contrast with the sports jacket and tennis shoes attire of the more typically professorial types. He got his initial funding from, of all places, Ross Perot's organization, but now has a large Congressional grant. Speaking of Washington bureaucracies he quipped, "paradigm shift occurs by attrition, not conversion."

Dr. Haley's research group had divided GWS patients into three categories based on a sophisticated analysis of symptom profile. The team then convincingly tied each patient sub-group to specific Gulf War chemical exposures and elucidated the predisposing genetic factors and resulting brain cell injury. The types of injury they discovered are not common to psychological disorders. Particular measures of brain function fell on one side of normal for one sub-group and on the opposite side for the other two. The abnormalities would have cancelled each other out to come up as "normal" if the GWS vets had been considered as one group. Dr. Haley warned that the MCS population might contain similarly diverse sub-groups.

Gender was an interesting theme at the conference. Dr. Thomas Kerns, a philosopher interested in medical ethics, lamented a general paucity of "chick stuff" in the discussion, given that MCS is a predominantly female malady. Four female heavy-hitters--Drs. Iris Bell, Claudia Miller, Grace Ziem and Gail McKeown-Eyssen--all submitted written comments but weren't present. One of the few female experts who did attend, Dr. Marti Wolfe, made reference to studies showing that the length of time new diseases take to gain wide acceptance after they are discovered is highly correlated with the percentage of victims who are women. I'm sure that this piece of information came as no surprise to the largely female audience. (Wilson emphasized that we have been waiting over half a century.)

As the subject of the conference was MCS you may ask about the air quality. One MCSer came to the audience microphone to say the afflicted were "dropping like flies" from fragrances. An unconfirmed rumor flew around that Dr. Fernandez-Sola was actually wearing cologne. Whatever personal-care chemicals may have been wafting about I wouldn't have stood a chance anyway in a carpeted, windowless hotel meeting room with a suspended ceiling. By the end of the weekend I was just short of delirious, despite my mask (but still too interested and excited to go home). On balance, I couldn't complain. I'm sure most medical conferences don't invite patient participation (which, at this one, was as unpredictable as a radio call-in show). And, after all, a groupie has to expect a monstrous hang-over after hob-nobbing with the band.