from sci med

[Guest guest]

If you are really serious about an organized, proactive

campaign............

Message: 1 of 2

Sent: Thu, 18 Nov 1999 20:55:14 -0500

<<Mike 7701 wrote:

<<If (and this is a big if) we could all get together and present a united

front it would go a long way towards getting our message across>> (snip)

He ended by saying:

<<The problem with all of this is that it takes energy and motivation, which

most of us have very little of. But good organization could go a long way to

overcoming that. Anyway, thats my spin. Sadly that probably as far as it

will go.>>

There are Lyme organizations involved in education, but this education does

little good as long as the conservative faction continues to have the ear of

the medical community. Other organizations are involved in funding research,

but, even though the bulk of current research supports our position, we

still aren't making progress. An organized, proactive campaign is long

overdue. But to do any real good, it needs to be a well-thought out,

step-by-step plan, and all of us need to focus on one agenda. As Mike said,

it's easy to have things backfire and do us more harm than good.

We're willing to use the Lyme Alliance as the vehicle for this venture, but

to do this we need the help of others to play key roles in putting this

together - and, of course, help with the work it would involve. We have the

necessary organizational structure in place - an established name, a

newsletter and bulk mail ability and our website - to be used in whatever

way would most benefit the Lyme community. What we don't have is the time to

do everything ourselves.

Someone asked recently, if there are so many of us, why aren't there more

than 250 messages on the Boston Herald site. Believe me, there are a lot

more of us, but a very small percentage interact with the newsgroup. We have

almost three thousand names on our mailing list for our newsletter

(Spotlight On Lyme), and get around 100 new requests for the newsletter

every month. A big percentage of these people don't have Internet access,

and of those that do, only a small percentage access the newsgrouup. So

that's why there are only 250 messages in reply to the Boston Herald

article.

So, to have a really effective campaign, we need to involve people from all

sources, not just the newsgroup - that's the only way we'll get the numbers

that will show the strength of the Lyme community.

The only thing that will hold us back is people not getting involved. Lyme

organizations are like trees, and you are the leaves on those trees. If you

decide to drop off that tree and use your energies in a pursuit of your own,

part of the tree's strength goes with you. Eventually, you'll end up

withering and dying. If the tree loses too many leaves, it, too, will die.

Leaves drop off for a variety of reasons - one might want to put it's energy

into starting it's own little website, another it's own little

newsletter....... but the most common reason is because it takes too much

effort. They think that, surely, someone else will do it for them. But will

there be enough of those someone's to keep the tree alive?

If you are serious about getting a proactive campaign going, just give us

the word and we can all get started. Anyone who has some experience in this

type of campaign or in political workings will be needed to help lay out a

format.. We can form a committee to hammer out an agenda for the campaign.

We'll also have to put together a plan to raise money to cover any expenses

that might occur.

Each of us will play a different part, depending upon our talents and

abilities, but every one of us will be equally important in making this

work.

Rather than taking up room on the newsgroup with this, if this is something

you'd like to see happen, please e-mail me. We can keep adding names to our

interactions as new e-mails come in. We can also set up a private chatroom

on the website for group discussions or a place for committees to meet.

Let us know if you have special skills to bring to the table - we'll need

people to write announcements for the newsletter and the website for each

new phase of the campaign (perhaps we'll make a section on the website

specifically for activists), people to work with the media and write press

releases and write sample letters to government representatives. We'll also

need people for the agenda committee to plan out the when, where and what's

of demonstrations and protests as well as how to address this politically.

We'll need a fundraising committee. We'll need spokespersons for our group.

And we'll need LOTS of people who will send letters to their representatives

and attend the protests and demonstrations. It can't stop with just one

thing, we need to be aggressive and persistent. There will be something each

of us can do.

It's up to you - if you really are serious about doing this, let us hear

from you soon.

Sharon Lyme Alliance, Inc.

http://www.lymealliance.org