I am a Lyme sufferer who was active on Lymenet for about two
years: after that, my treatment was pretty successful (I am doing
homeopaathy) and I am
now in a PhD program at Rutgers in Information &
Communication. I am focusing primarily on libraries (I am a
researcher & librarian) but have a very strong secondary focus on
alternative health communities. I've written a couple of papers on
Lymenet and the critically important role patient-run online
communities play as opponents of, and alternatives to,
mainstream medicine. I am now beginning to work on a paper
for publication. I was hoping that you might be able to give me
some time: I know you that you are all working tirelessly to
understand the ways in which this complex of diseases damages
the body, and that you understand that we are all of us in a life-
or-death struggle, with alternative communities like Lymenet
one essential piece of the puzzle.
I have a bunch of questions I was hoping you would answer for
me, about the self-assumed role of 'greeter' or 'guide' that some
members of Lymenet (like you) take on, to address the concerns
of newcomers and give them a sense of some of the possibilities
available to them for alternative treatments. If you're willing, I
will send them to you: if you have additional questions, please
ask.
I posted this in activism as well
Thanks for your time - Pam Read [email protected] Posted by Keebler (Member # 12673) on :
- Pam,
Thanks for your work on this matter. Due to energy constraints I don't use my PM function here.
However, I sent you an email ("Keebler" is in the subject line so you can know it's safe to open).
I forgot to mention this in the email but, if you reply, please do not double space. It's very hard to read double spacing -- just as hard to read solid blocks of text.
Short paragraphs work best with a line of white space every 3-4 lines at the max. Otherwise, my eyes just can't read it without extreme pain and vertigo - and it takes a long time to sort it all out. -
Posted by Keebler (Member # 12673) on :
- You might also want to look at BettyG's stellar advocay efforts at MDJunction, the lyme section.
My eyes cannot bear to read that site for even a few seconds (it's so busy and distracting) but I know she works very hard to help others there.
- Not an exclusive or formal list. Just the top organizations that came to mind. Remember STATE and LOCAL lyme support groups, too. -
Posted by Lymetoo (Member # 743) on :