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Posted by Teekoe95 (Member # 22859) on :
 
We are trying to start a Lyme support group in our area. Can you share with me what you like best about your group? Topics, speakers, etc.
 
Posted by Robin123 (Member # 9197) on :
 
Here are some aspects I find helpful at meetings:

*having a knowledgeable and considerate person or two to conduct the meeting

*having knowledgeable people attend to help orient new people about what's going on

*I've seen some groups read meeting protocols before they start, and some not do that - I suppose that's up to each group.

For example, not saying doctor names in the group but discussing doctors privately, that what is said in the group remains confidential, that people will respect the similarities and differences of each other's experiences, etc.

*letting new people go first before those who have been to the group before

*doing a circle go-around so that everyone gets a chance to share who wants to

*understanding that everyone presents differently and responds differently to treatments

*it's important to give people hope that it's possible to discover treatments that are going to be able to turn them around towards better health eventually

That's a big one, since so many come quite sick in the beginning, and then it is possible to turn it around and do much better in some time to come. People need hope.

*sometimes good speakers can be invited to present on topics

*can set up a closed facebook page for conversation and connection inbetween meetings

*nice if a meeting announcement can be emailed shortly before each meeting, so have a mailing list sign-up sheet at the meeting for that purpose.
 
Posted by Tincup (Member # 5829) on :
 
Good for you!!! It is a lot of work and a commitment- more than you can imagine probably, so do plan to have good (healthy) help.

We have a number of excellent groups in Maryland. The meetings are well attended and the leaders are so so so dedicated. The jobs they do are fantastic. I go to them when I'm able and have never been let down.

You don't say where you will be setting up this group, but if the winters are cold I would be sure to tell folks at each meeting or in a reminder that if the schools are closed that day, even for a couple of hours, the meeting is cancelled.

We've had some folks come out in icy weather for a meeting only to slip on the ice or be in an accident. That's so sad.

You might want to have monthly meetings, but leave December off the calendar for holiday reasons?

Doctors at meetings are usually a big draw, but any of them that charges money to present a program for you skip them over. As volunteers we've worked ourselves to death helping patients and doctors, so there should NOT be a charge.

ILADS had announced at one point they would be charging for doctors to do programs- so do check before you commit.

It is nice to give a "token" gift to them if they do come- gas money maybe or a basket of cheese, whatever. But do not pay them to come.

The SE PA group also has a lot of good speakers at their meetings. You might want to see their list to get ideas.

http://www.lymepa.org/

I am sure many others do too, not trying to pick one out above the others, I just don't always see their lists.

If you need some handout literature- free or very low cost- this link is for you. Feel free to print out what you need.

https://sites.google.com/site/marylandlyme/handout-literature

A refreshment committee is nice too if you can get someone to commit. A cold drink and/or coffee with a light snack helps bring folks together.

Some unusual topics I've enjoyed- a short list from many many topics.

A lady from a health food store came in to show us how to make healthy drinks like they sold in their store and why they were healthy. We all got samples while there.

Prevention topics- like companies that spray yards, etc.

Your local vet if he/she is up on the topic is nice.

Herbs and what they can do.

Oils and how they work to make life better.

Specialists in the field- an ob/gyn, a chiropractor, a physical therapist, a LLMD, a naturopath, a lab person, etc.

You might want to contact IGenex and ask for Bob to see when he might be in your area.

Some folks have a monthly meeting and also offer a daytime (lunch or after lunch meeting) in a restaurant, with each person paying for their own ticket of course.

Like the lunch meetings, I'd personally like to see some meetings in the day time hours. Most are at night (dark earlier in winter) which excludes many people because they can't or won't drive after dark.

Free time is nice. Having the meeting begin at 6 PM for example, and allow folks to chat with each other for 15 minutes, then start your formal program or meeting. Call it "introduction time" or whatever so they know what is happening.

Some meetings that start with a program right at starting time don't allow folks to chat with each other and often that is what is needed.

Ok, I'm done. If I can assist in any way, please let me know.

And thanks again for taking on this job! You rock!
 


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