But I'm back at it, with a new look and lots of catching up to do.
After 2 years serving as MLA's Communications Coordinator, I became president in January. I still do the CC job but now I'm also the guy who has the last word . . . literally!
Still lovin' it, though. Even though it's a slog, the small successes are plenty rewarding. Just this week I heard back from the dean of the med school that he will be looking into what they teach about Lyme and how the school can help Lyme patients. That response came over 4 months after the U president shared a letter of mine, then I wrote to him directly, and then I followed up with an email this week that included some research papers showing persistence of Bb after the "standard" treatment course.
Naturally, there were also frustrations to balance out that happy day (same day, actually). A WSJ reporter had contacted me to find a source to talk about their experience with Lyme and treatment. We spoke at length about the obstacles getting Lyme disease diagnosed and treated. I shared the same research papers with her that I shared with the dean. Not only did she not refer to them in the article, but she didn't bother asking her infectious disease "expert" about them, either. As usual, the article focused on the disagreement rather than the issue, that people are sick and not getting appropriate care.
2 comments:
What was her point then, especially if she had it herself!!?
I am so glad I found you on here! I live in MN & got the pleasure of having a brief phone conversation with you a few years ago. You are a true angel, I just recently started a blog you may be interested in following my story and thoughts as I try to make it as informative and open as I can. New to it and haven't shared the page with many yet. Did you know there is a meeting in Duluth on Saturday about people dx with MS living in Lyme endemic areas?
~crystal
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