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This topic has been moved to Activism.     next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Att: Keebler, Gigi, and others: Need help with a study of Lyme & Lymenet

   
Author Topic: Att: Keebler, Gigi, and others: Need help with a study of Lyme & Lymenet
psr1
LymeNet Contributor
Member # 22957

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Hi Lymenet members:

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]

Posts: 360 | From New York | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
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.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
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.

http://www.mdjunction.com/lyme-disease

MDJunction - Lyme
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
To be sure you have all of these . . . .

Here are some top lyme advocacy organizations. Some are set up to welcome volunteers in various ways.

Each has some differences or focus, but they are all fully "lyme literate" and ILADS "minded" -- bringing them all together.

ILADS - www.ilads.org

Lyme Disease ASSOCIATION - http://www.lymediseaseassociation.org

Tick-Borne Disease Alliance - http://tbdalliance.org

Lyme Research Alliance - http://www.lymeresearchalliance.org/

Treat The Bite - http://www.TreatTheBite.com

Lyme Disease.org - http://www.lymedisease.org

The state discussion groups through this last link:

http://www.lymedisease.org/resources/support.html

- Not an exclusive or formal list. Just the top organizations that came to mind. Remember STATE and LOCAL lyme support groups, too.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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Moving to Activism .. again

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96173 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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