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.

Who Do We Think We Are?

Want to understand how Multiple Chemical Sensitivity (MCS) impacts and changes people? Want validation for your own experience as a chemically-sensitive person? Want to expand your thinking about the social context of this political hot potato of a disease? Want to leave the unconvinced hand-wringers in the conceptual dust, wasting their breath on the controversy over the problem's existence, while you speed off to new intellectual horizons with the wind in your hair? If so, author and psychologist Pamela Reed Gibson is your gal. Her words are like alpine air to an asphyxiating person and I try to read every last one she puts down on paper.

Last year Gibson and some colleagues published a study* (available through CIIN) on how MCS changes people's sense of who they are. (For those who'd prefer a less academic introduction to her work, the first edition of her wonderful book, Multiple Chemical Sensitivity: A Survival Guide, is reviewed on Amazon and the second edition can be purchased at www.earthrivebooks.com.) Gibson's team hypothesizes that the always-difficult adjustment to chronic illness might be particularly problematic for those with diseases like MCS that aren't understood or generally recognized as real. For the study, they analyzed a couple hundred replies to a questionnaire asking the mostly-female and mostly-white respondents about changes in their identity resulting from the illness.

It does seem, when illness becomes chronic, that one is eventually pulled to divert some attention from the quest to get back to one's "old self" and to try to accept, discover, or create a "new self." Gibson et al. review previous work characterizing that process in the case of accepted diagnoses. The cited researchers collectively paint a picture of a diminished or fragmented sense of self that ideally shifts to a more positive, integrated one that incorporates the effects of the disease. I could recognize myself in the description of an attempted short-cut to the desired transformation: A "well" identity is maintained for interacting with others while an "ill self...copes privately with the demands of the illness." (That's a trick, by the way, that's easier to pull when you can keep the illness invisible.) An important psychological task in making the positive shift is separating one's sense of self from the disease, not blaming oneself. The study authors point out that medical validation for this distancing is often lacking with MCS. Indeed, I'd say, doctors often actively discourage the effort.

Before I touch on the research findings let me say a word about Gibson and friends' refreshing approach to their project. First of all, they come out of a school of thought that doesn't conceive of knowledge as objective, but as socially constructed. Their goal isn't so much to get at any absolute truth as to instigate social change through the illumination of oppressive constructs. They describe MCS as "psychologized" and "delegitimized" condition and the "marginalized" people who have it as "situated in an experience constructed as 'not real' by dominant social and economic forces." They seek a "dialogue with the subjects of their investigation, whom they respectfully refer to as participants, and they want to provide "a forum for the expression of voices unheard in mainstream medical discourse" (the patients', that is). As it happens, I find myself situated in an experience where tortured social science jargon can sound like lute music on a breeze to my marginalized ears.

The eight common themes culled from the questionnaires reveal, for starters, a sad litany of losses in both the material and non-material realms for people with MCS. I found reading about those many losses momentarily overwhelming at times, but, on balance, having them carefully catalogued and clearly articulated was enormously helpful. I felt able to pin down more precisely the nature of the struggles I face and less alone with it all.

Under a thematic category called "loss of a stable, familiar personality," Gibson's group reports participants variously feeling that they had become more fearful, less independent, more self-centered, less tolerant, more mean-spirited, more envious, less kind, less fun-loving, less valuable, and less self-valuing. (Nobody slit your throat yet, experiences of growth are covered in other categories.) One woman is quoted at length describing the difficulty of knowing who she had become when her emotions and behavior had been frequently affected by chemical exposures over a significant period of time. "I am no longer a separate entity," she writes, "I am what I am with the influence of the chemicals now."

Another theme covered losses related to "self-positioning," or relationship with the world. The researchers suggest that losses related to employment were the most impactful on identity, although people also had profound changes in their roles as partners, parents, and friends. Respondents described their wasted potential and inability to contribute what they would have to their families and communities. I couldn't help wonder if identity concerns might not be a secondary consideration for someone who had become indefinitely homeless through a loss of livelihood. In this section and elsewhere I would have appreciated some separate discussion of those in the most dire circumstances (if, in fact, they were represented).

Another theme involving the social self was identified as "emotional suppression to meet others' expectations." Participants related hiding their illness and their feelings about it, even from loved ones, to prevent isolation, loss of relationships, and negative judgments, both spoken and unspoken. One comment I found ironic came from a participant who deprived herself of desired psychotherapeutic help because she considered it crucial not to risk being labeled as "a 'crazy' EI." (I think the same institutions that push us toward psychological help often simultaneously prevent us from receiving it.) The analysand wannabe describes her necessity, somewhat mysteriously, as a "political" one. However--again considering the worst case--I thought of people for whom a job or other means of survival might be threatened by honesty about their illness-related experience or needs.

Some portion of those surveyed felt they had developed various positive qualities, or become better people overall, through meeting the challenges of MCS. I found their testimony inspiring, at least when I could avoid comparing myself to them (or to their self-images). They described themselves as wiser, emotionally stronger, more self-aware, more in touch with nature, less in need of external validation, more informed, spiritually richer, more confident, more life-loving, less materialistic, more politically aware or involved, and as having a stronger sense of self, more balance in life, and clearer priorities. In my reading of these positive accounts I didn't see much emphasis on greater abilities for connecting emotionally with others, which made sense, but seemed a sad comment.

The Gibson study is noteworthy not just for detailing the impacts of a nasty disease but for characterizing the institutionalized mistreatment of the victims in society and the reasons for it. One identity it validates, and even encourages, without explicitly discussing it, is that of "member of a socially-oppressed group." The authors do discuss the "activist" identity taken on by some people with MCS, noting that it doesn't measure up to cultural expectations for hard work and success. But not all MCS patients have sufficiently good health to be active in any sense of the word, and activism that doesn't recognize what it's up against, externally and internally, can be misguided and frustrating. It seems to me that we MCSers need to exonerate ourselves from responsibility for our social oppression as much as for being sick. I think doing so can actually result in a more measured, reasoned advocacy for ourselves, both individually and collectively. For help with the job there's nobody like Pamela Reed Gibson.

*Gibson, PR, Placek, E, Lane, J, Brohimer, SO, and Lovelace, ACE. (2005) Disability-Induced Identity Changes in Persons with Multiple Chemical Sensitivity. Qualitative Health Research 15(4), 502-524.

Check Out Nontoxic Radio

Last week I got a mysterious e-mail from "The Voice of Reason." This apparently-human embodiment of logic and sense had deduced that I might be interested in a weekly radio show airing on a low-power FM station in Massachusetts. Sure enough, "Antidote Radio", hosted by the Voice herself, covers a variety of topics related to Multiple Chemical Sensitivities (MCS). Better yet--for those of us trapped outside a 10-mile radius of WXOJ-LP--the show streams over the internet. On my rare and vintage computer set-up it doesn't so much stream, as drip, but, with patience, work-arounds are possible. (Come on, you sighing MCSer out there, you can do it, your life is a work-around.)

Boy, I understand why those media monopolists are trying to get the internet under control. (Stop them.) I felt a little giddy considering the possibilities of a weekly international webcast representing the perspective of people with MCS. Even if bed-ridden, we could get the latest, hear each others' voices, organize to advocate for ourselves. No cosmetics executive would be able to pull our programming. Maybe, if we were funny, and the tiniest bit subtle, we'd be invited to roast our enemies at their own table, a la Stephen Colbert. (Through a heads-will-roll failure of domestic intelligence the comedian was allowed to satirize our Prez at length, to his face, at a televised dinner.)

Anyway, starting small, support your Voice, listen to "Antidote Radio." You might even hear a conversation with a currently text-bound chatterbox posing as a superhero.