Sunday, August 13, 2006

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.

4 comments:

Anonymous said...

Dear Masked Avenger,
Thank you for so eloquently recounting your experiences at the CIIN conference. It has given me a zap of hope hearing about leaders who care about finding answers and treatment for people with MCS all coming together.

Congrats to CIIN and all those who participated. And a big thank you for attending and telling us about it.

Stormchaser

Bobalong said...

Very good review. It was the next best thing to being there... better really, I don't have your MCS hangover! Thank you for reporting your experience.

CIIN deserves congratulations for organizing and hosting such an event!

Janya Barrish said...

Dear Masked Avenger,

As an environemtally ill person, who has to wear masks I fully appreciate
the name. Thanks for the review of the conference. Were you able to identify any physicians who would actually "treat" and "provide legal support" to the environmentally ill?
Its near impossible to have qualified physicians fully stand by us. Please check out my blog: oeherald.blogspot.com and also: informedbattle.blogspot.com when you get a chance.

The Masked Avenger said...

Yes, Janya, I thought a number of the doctors at the conference were our unflinching supporters, despite negative consequences to themselves. One noteworthy one was Dorothy Calabrese, M.D. She has been involved in filing a legal appeal on behalf of Medicare beneficiaries. (And I will check out your blogs when I have a chance.)