May 12, 2012

Chocolate and Perfume

Last weekend, my friend Lou and I attended the ME/CFS 20th International Awareness Week Seminar at the Darrebin Arts Centre.  Lou's had ME/CFS longer than me and was one of the most supportive people close to me when I was first diagnosed.  We hadn't caught up in a while, so we decided to have lunch in the city beforehand.

Lunch in the city became churros from the station when Lou's V/Line train arrived late.  We ate them on the train to Darrebin and managed to get chocolate dipping sauce all over the floor, the seat and ourselves (you really can't take us anywhere).

First order of business when we got to the Arts Centre was to get cleaned up in the bathroom.

While Lou had her jeans under the dryer and I was realising that the chocolate had spread to the inside of my tote bag, a professional looking older woman in a bright red jacket came in.  She smiled and laughed with us as we explained our odd state.

The woman in red was later introduced to the attendees as Dr. Kathy Rowe from the Royal Children's Hospital.  There'd been a fair amount of talk about genetic predisposition by that point in the day, so Kathy's work with kids had become of particular interest to Lou (two of her kids have food intolerances which was identified as a warning sign).

From what she was saying, Kathy spends a decent amount of time getting schools up to speed with the concept of pacing.  Having gone through high school with unsympathetic teachers, Lou was very appreciative of this work.  "Well," she said, "At least if I've passed this on to my kids, I know I can send them to the Children's Hospital for help."

Two of the other speakers I'd met before; Dr. Don Lewis who appeared on No Limits with me two years ago, and Dr. Chris O'Callahan who diagnosed me with POTS.  Don's talk was really aimed at educating the GPs in the room, which was good, and Chris was all about explaining Orthostatic Intolerance.

The main thing I got out of Chris's presentation was that Neurally Mediated Hypertension, Postural Orthostatic Tachycardia Syndrome, Orthostatic Intolerance and Neurally Mediated Syncope are all basically the same thing medically speaking.  I'll stick to calling it POTS.

The speaker that really got my attention though was Associate Professor Sonya Marshall-Gradisnik, a Neuroimmunologist who's been studying NK cells in people with ME/CFS.  A lot of the science went over my head, but she's basically found pretty solid evidence that our immune systems really are stuffed.  This research, combined with the Rituximab trials in Norway, means that evidence for ME/CFS being an autoimmune disease is mounting up in a big way. 

Sonya is apparently now getting bigger and better research grants for the work she is doing, which was very encouraging to hear.

A side note on human stubbornness: Even at an event clearly stated to be "chemical free" on the invite, people still wore a vast variety of scented deodorants and perfumes.  

The concept of Multiple Chemical Sensitivity is not that complicated.  This makes the people who turned up all sprayed and dabbed either stupid or cruel.  I saw one girl who had clearly made an enormous effort just to get out of bed to be at the seminar.  If the chemicals were making Lou and me nauseous, that girl was probably down for a migraine later in the day.

On a more positive note, after hearing it repeatedly throughout the day, I now know how to say "Myalgic Encephalomyelitis".  I've only had it for six and a half years; it really was high time I learned to pronounce it!

1 comment:

  1. Wow!1 I'm glad I'm not the only one who doesn't know how to pronounce the disease she has!!! I'm glad that you were able to get some encouragement out of the event.


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