I've been busy setting up yahoo groups for several states, modeled on CaliforniaLyme, which is working amazingly well with over 300 members and hundreds of messages every month.
There are many people outside of the existing networks who need information and support and LymeNet can be a bit overwhelming. There's something to be said for smaller and more local, especially since political action starts in your own state. Many CaliforniaLyme members volunteered during Lyme Disease Awareness Month last May. We don't have separate tracks for activism and medical and support, so everyone talks to everyone. It seems to work since we're a manageable size.
Please check the sites out at http://health.groups.yahoo.com/group/ followed by the state name (in full with no spaces) and "Lyme." (e.g. newyorklyme) So far there are groups for CT, MA, NY, PA, NJ and CA. They are slow starting but I think they have potential. I could use help moderating and also inviting people so if you have any ideas, please contact me at [email protected].
Posted by Melanie Reber (Member # 3707) on :
So wonderful of you to do this Phyllis,
thank you, M
Posted by timaca (Member # 6911) on :
Almost all states now have their own state group. I believe this will pull in other folks who are not here but who will gravitate to a state group, which will be smaller and more focused on local and state issues. However the state groups will also be useful for spreading the news about national activism as well as useful for information and support about TBDs.
I encourage any of you who are active here to join your state group. Some of the groups have 20 or 30 people; many have only one or two so far. I'd like to grow these groups so each state becomes more empowered. Please help. I'm calling it the "Lyme Community Infrastructure Project."
In the cases where state groups already existed, I am trying to make sure leaders or individuals in those groups have access to the information that fairly flies around here. We have to make sure no one is out of the loop so they have an opportunity to participate in our actions and also that we give new people a place to plug in and get help.
California Lyme is almost to 400 members after 2+ years. It's a great bunch of people. And that is nothing compared to what we could have in the northeast - remember, many people in California still think we don't have Lyme here. Phyllis
Posted by Lioness (Member # 10655) on :
I'm going to see if these come thru as hyperlinks:
AlabamaLyme AlaskaLyme ArizonaLyme ArkansasLyme CaliforniaLyme
Posted by pmerv (Member # 1504) on :
well, no, they don't. So just follow previous instructions to get to the sites.
What I am doing is once I get a local moderator, I send everything to him/her and s/he posts it to the group. That reduces duplication because I send out to multiple groups simultaneously.
We should be able to organize spring LD Awareness Months in many states using these groups. They are good for getting bodies to rallies, carpooling to support groups, sharing regional information, etc. Phyllis
Posted by sometimesdilly (Member # 9982) on :
Phyllis-
does MD have a site? If not, I will be happy to assist setting up/moderating, whatever is required. Please let me know if I can help.
This has been a learning experience. Some states aleady had groups. In most cases, I have worked something out with existing groups. This is not about me controlling the groups. It's about getting an infrastructure established for the Lyme community. (I keep thinking about retiring - I'm 63.)
I think the project actually has been encouraging to some people who have state groups. I will try to help with the state groups however I can. I want local people to control the groups. The groups are growing. I don't know how people find them. I did invite some from the CALDA member list but that does not account for all. People are surfing, looking for solutions.
I feel a bit guilty about all the political notices I post on the groups. Sometimes it is overwhelming. Too bad we can 't just be sick and go to the doctor and get treated like normal sick people. We have to be politically active, too.
Please check out your state support group and support it, support the people who come there who do not "do" LymeNet. LymeNet is great; I refer people to LymeNet. But states are good and we need states.
Posted by playpup (Member # 1768) on :
Washington State already has a state-wide support group, which was formed in 2003.
We may be small, but we're making progress.
Posted by pmerv (Member # 1504) on :
The state groups now have somewhere around 1000 members total, half being in CaliforniaLyme (at 537). Not all the groups I set up accept members, particularly those in states where there was a pre-established group. However I do use them to post notices visible to the public, the same notices I send to the other groups.
We have not had any problems with the groups except that occasionally people will post doctor names. There are local moderators for about 20 of the groups.
The biggest group is CA, with AZ, CT, MA, NJ, NY, NC, PA, TN having more than 25 members. (NY & PA have 52 & 62 respectively) A lot of people are contributing to make the groups good, especially, because of the group size, CaliforniaLyme.
The last couple of days I have sent around the news about President Bush, tincup's press release, and the article from the Cape Cod paper, contributed to by MassachusettsLyme moderator Nancy Wood. CALDA is working on a press release and I am encouraging people in the state groups to contact their local newspapers to see if they can get an article locally. The window of opportunity is open for just a short time - news becomes old in just a few days.
Please do get involved in your own state group. I do think they are going to be good for empowering us as a community. People inside a state also tend to have a better idea of local resources, so they are good for newbies, too.
While I love LymeNet and refer people here, I have always had a beef with them for segregating activism. I think that is a big mistake. On the state groups, we are all in it together. Also it's convenient to get messages in my email inbox rather than coming to a website.
That's all for now. Feedback welcome.
Posted by pineapple (Member # 11904) on :
Phyllis,
When someone posts a message in their state, do you automatically post it to others? I was just wondering because I have seen lots of news from other states in my state's yahoo group. I was kind of hoping it would stay more local to the state, because we can get the entire nation's news here or on the web and through the many list serves in existence already. I do understand, however, that what happens in the entire nation does have a trickle down effect to us all.
I think it will be very successful if more would participate. I might send out an email notice of the group to my contacts.
Also, are there restrictions about articles than can be posted in entirety there or citations? If we put the source of the info and the copyright notice, will it be ok?
Posted by merrygirl (Member # 12041) on :
Is there a general Lyme yahoo group? I think I belong to that, but I just signed up for the MA group. Willing to help where needed.
Melissa
Posted by kam (Member # 3410) on :
One more step to all of us being connected instead of islands here and there and everywhere. Posted by pmerv (Member # 1504) on :
Pineapple, good questions.
I am also on the Lymenet_leaders group, where I try to remember to post the same notices so leaders of other groups can take them home to their groups. Recently someone mentioned copyright law. I have not worried about it, but maybe we should. The thing about the yahoo groups is they are kind of private. You have to answer a screening tool before your membership is approved. Yes people can lie but mainly it's a way to keep spammers off. It works for this purpose. I do post entire articles for the convenience of readers. I'm not sure how serious a concern it is. I think on a public forum it might be a bigger concern.
I do not automatically post every state's articles to all states, but often people are interested. I'm in CA but I loved the recent article from Cape Cod. It gives us ideas for articles that can fly in our own papers. If they are good articles, they make us happy. If they are bad articles, we are mad but at least we can write letters to editors. Sometimes there is an article that seems particularly relevant to one area and not others, so I post it only in those areas.
Also, on groups where I have moderators, I don't send notices directly to the groups, but to one moderator, who makes the decision on whether to post it. It gives a bit more local control.
Yes there are other general Lyme groups. I am a member of Lyme-Aid, for example, and it's a big group that cuts across state lines, but the owner moderates my posts. If she doesn't agree with what I'm saying, she doesn't post it!! I prefer a more open forum as long as people are respectful.
I am also up front about being supportive of ILADS and LDA, which may not be everyone's cup of tea, but I happen to think United We Stand, Divided We Fall. I don't agree with everything but I am involved and support group decisions. So that sets my family of state groups apart in some sense.
CaliforniaLyme has just amazed me, with its growth and the expertise and generosity of so many people. And we stay on topic, too! I hope the other state groups can rise to the same level. There are still so many people who fall through the cracks.
I'd love to work with any state leader here who is interested in using my state group to unify and empower patients in their state. That's my dream. United, we'd be unstoppable. I would also be happy to work with leaders who already have their own groups, if I have anything they think would be helpful.
As I said before but it bears repeating, in several cases where there already were existing state groups, my group only serves as a message board and points to the other group for membership. I have no interested in competing or dividing. I do however want to give people all the information and not censor unless it's destructive energy (which we have done only in the case of the attacks on ILADS, if my memory is correct).
Thanks for your support.
Posted by pmerv (Member # 1504) on :
I have to add one thing: at the moment, my posts dominate many of the groups (even if forwarded by the local moderator). This used to happen on CaliforniaLyme, too, and bothered me. The solution is for other group members to get active and drown me out! I love that to happen because it's a sign of vitality. Now you have to search to find signs of me on CaliforniaLyme. I'm just one small voice and it suits me fine.
Posted by bettyg (Member # 6147) on :
Phyllis, just went to IOWA's you set up.
can that be changed to ARIAL, 14 size vs TNR which runs all words together for me? thanks for your consideration for folks like me with low vision and extra sensitive lyme eyes! Posted by pmerv (Member # 1504) on :
Betty, sorry, they don't let us choose fonts or sizes.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by pmerv: I'm going to see if these come thru as hyperlinks:
[ 15. August 2007, 08:09 AM: Message edited by: treepatrol ]
Posted by valymemom (Member # 7076) on :
Thanks, Tree!
Posted by Ann-OH (Member # 2020) on :
The Lyme disease Association of Ohio disbanded a few years ago.
What appears when you click on the name of that group is what was on my website when LDAOhio existed. That information is no longer on my website.
I guess that is proof that whatever you put on the internet is there forever.
Ann - OH
Posted by bettyg (Member # 6147) on :
tree, thanks big guy for the direct links! Posted by motownlyme (Member # 11485) on :
Please, please make one for West Virginia.
Posted by mtree (Member # 14305) on :
I just can't find any type of support group in New Jersey. Anyone know of any? thanks Posted by AP (Member # 8430) on :
Hey guys... When I couldn't find a support group, I started my own. I wasn't feeling my best, in fact it was really hard to organize anything. Meeting with all those people who knew what I was going through really made a difference.
If you can't find a support group in your area, consider starting your own. All it takes is a friend to make life a little more bearable.
Posted by mtree (Member # 14305) on :
Thanks Ap.....
I think I may have to start something.... I just really want to find people in my own backyard........to chat with, hang with.....just have a connection of what we go through in our everyday lives. Posted by AP (Member # 8430) on :
quote:Originally posted by mtree: Thanks Ap.....
I think I may have to start something.... I just really want to find people in my own backyard........to chat with, hang with.....just have a connection of what we go through in our everyday lives.
I know, that's what I was looking for. It really helps - not just you, but everyone around you. My boyfriend has been able to speak with other Lyme spouses and hear many stories that made him really understand what it was that I was going through. Check out meetup.com for an easy start. They charge I think $75 for 6 months (I really can't remember), but it puts your group out there. The members really started pouring in for me... Don't be discouraged if you don't have any interest at first... If you build it, they will come. Posted by bettyg (Member # 6147) on :
mtree, i gave you info yesterday about support groups on left side, and there are THIS MANY groups already therre?
~Cape May County ~Greater Raritan Lyme Disease Support Group ~Long Valley LDSG ~Lyme Care Support Group ~Lyme Disease Association, Inc. ~Lyme Disease Information Group of Burlington County ~The Lyme-Tick Borne Disease Support Group ~Lyme Vaccine Victims ~LymeLight Lyme Disease Support Group ~Morristown Lyme Disease Support Group ~NJ Self-Help Group Clearinghouse ~North Jersey Lyme Disease Support Group ~Resources Only ~Southern Ocean Co. Lyme Support Group ~Sussex County Lyme Support
Posted by mtree (Member # 14305) on :
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