pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Since the last update on April 3 (4 months ago), membership in the CALDA network of online state groups has grown by 300 people. We are up to a grand total of approximately 2065 members across the US. Since I am counted as a member of all the groups (because I am the owner), subtract about 50 from that total. Even so, the increase is more than 300 new members since April, 400 if you count non-CALDA groups (and why not!).
Some states have grown more than others. California, the oldest and largest group in the network, takes the top place with 49 more people, for a total of 696. New York and Massachusetts vie for second place, with 115 and 112, respectively.Connecticut comes in 4th with 96, up a healthy 37 new members since April. Massachusetts, though bigger than before, has grown more slowly, with 29 new members this period. New York gained 18 in the same timeframe. Pennsylvania is at 90 (up 10). These are the top 5 in terms of numbers.
Some of the less numerous groups had good growth: Arizona is a very active group that also has real meetings; it added 13 people and now has 73. Does that surprise you? Maybe all those infected East Coast transplants moved west and finally developed symptoms. Georgia added 10 new members for a total of 40. Maryland added 11, up to 54; New Jersey is now at up 13 to 58; North Carolina is at 47(up 9); Virginia up to 42 (up 11). MilitaryLyme is now at 37 (up 14). The Spanish group, Lyme-espanol, had a breath of new life thanks to the heroic efforts of bilingual moderator Virginia Anez who is madly translating materials into Spanish. Several other people have volunteered to help. The goal is to have everything on that site in Spanish. Lyme-espanol now has 7 people.
Some states are underrepresented: Delaware, which is supposedly the most endemic state in the country, if you compare reported cases with population (56.5/100,000) has only 11 members, up one (1) from April; Connecticut, with1788 cases reported in 2006 (incidence 51.0/100,000) should be way ahead of California with 85 reported cases (incidence 0.2/100/000) for the same period. But it is taking a while for word to get around and Connecticut has been plagued in the past by divisions among groups..
Other states with online groups not in the CALDA network also are underrepresented: for example New Hampshire with an incidence of 46.9/100,000 and 617 reported cases in 2006 has only 83 group members. However the Maine group, with 214 members (incidence 25.6/100,000, 338 reported cases in 2006), is doing well; so is Michigan with 140 members (incidence 0.5/100,000, 55 reported cases). They increased by 22 and 15 members, respectively, since April.
There are another 895 people in non-CALDA state groups and who knows how many in non-state-based groups. In states which have other, non-CALDA online groups, the CALDA site "points to" the other state groups. This spreads the net a bit wider for potential members, and the non-CALDA groups have grown by over 100 members since April, to a total of 895.
One of the ideas behind the state groups was to encourage activism at the state level. We are trying to keep people in their own state's group, even if they apply to a different group because they see a doctor in another state. However, if a person has a compelling reason to join a state group different from where they live, we will listen to arguments. But we do want to encourage people to get involved in their own states. There are plenty of groups where membership does not depend on state residence.
We still need local moderators for a number of the groups. If you are willing to serve as a moderator in your state, please let me know. The states with no moderator are: Arkansas, Hawaii, Idaho, Kentucky, Louisiana, Nebraska, North Dakota, Ohio, South Carolina, South Dakota, West Virginia, Wyoming. These groups are very small (10 or less). A moderator shepherds the group, keeping an eye on things, admitting and welcoming new members, sharing information, and spreading the word about the group. We could use co-moderators on other groups this is something you would like to do.
The lesson is that we have a potential for a lot more growth in many areas. Please let people know about the groups; I think they can be very helpful. There are some fliers on the CALDA website under Activism if you can think of a place to put one up (dr. office, vet office, feed store, co-op grocery store, clinic, library). Particularly, let support group members know about the online groups so they can communicate between meetings. The groups are also valuable if you have an event to publicize or are trying to get people to come to a rally or demonstration. If you are a support group leader in your state, please use the online groups to reach other people in your state. If you post interesting items, I will share them with other states.
Finally, if you are a leader, activist or patient advocate, please plan to attend the Lyme Action Program which is being given on Thursday, October 16 in conjunction with the joint LDA and ILADS conferences October 17-19 in San Francisco. Information is on the CALDA website http://www.lymedisease.org/activism/lyme_events.html At the moment you have to print out a form and mail it; we will set up PayPal registration soon. We've made a great effort to keep costs down and to design a worthwhile program for you and it would be great to meet you all.
Phyllis Mervine
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
I didn't realize Oct 16 was this meeting. This is the date the Napa Library gave me to show the movie Under Our Skin. What is CALDA member
Posts: 22 | From California | Registered: Jul 2008
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Since I'm in CALDA and I set up the online state groups, I call it the CALDA online state group network. The state groups I set up are "members" of that group.
Is that what you meant?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
hi phyllis,
any chance i can beg you to break up your long paragraphs into shorter ones for neuro folks like me.
i'd be interested in hearing how your 50 state groups are working out, etc. thanks phyllis!
just click on PENCIL to right of your name and it's easy to do.
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Betty, I thought those WERE short paragraphs!!! Here is it again, just for you.
BTW, don't forget to sign up for the Lyme Action Workshop in San Francisco in October. It will be exciting to meet in PERSON!
Since the last update on April 3 (4 months ago), membership in the CALDA network of online state groups has grown by 300 people. We are up to a grand total of approximately 2065 members across the US.
Since I am counted as a member of all the groups (because I am the owner), subtract about 50 from that total. Even so, the increase is more than 300 new members since April, 400 if you count non-CALDA groups (and why not!).
Some states have grown more than others. California, the oldest and largest group in the network, takes the top place with 49 more people, for a total of 696. New York and Massachusetts vie for second place, with 115 and 112, respectively.Connecticut comes in 4th with 96, up a healthy 37 new members since April.
Massachusetts, though bigger than before, has grown more slowly, with 29 new members this period. New York gained 18 in the same timeframe. Pennsylvania is at 90 (up 10). These are the top 5 in terms of numbers.
Some of the less numerous groups had good growth: Arizona is a very active group that also has real meetings; it added 13 people and now has 73. Does that surprise you? Maybe all those infected East Coast transplants moved west and finally developed symptoms.
Georgia added 10 new members for a total of 40. Maryland added 11, up to 54; New Jersey is now at up 13 to 58; North Carolina is at 47(up 9); Virginia up to 42 (up 11). MilitaryLyme is now at 37 (up 14).
The Spanish group, Lyme-espanol, had a breath of new life thanks to the heroic efforts of bilingual moderator Virginia Anez who is madly translating materials into Spanish. Several other people have volunteered to help. The goal is to have everything on that site in Spanish. Lyme-espanol now has 7 people.
Some states are underrepresented: Delaware, which is supposedly the most endemic state in the country, if you compare reported cases with population (56.5/100,000) has only 11 members, up one (1) from April; Connecticut, with1788 cases reported in 2006 (incidence 51.0/100,000) should be way ahead of California with 85 reported cases (incidence 0.2/100/000) for the same period.
But it is taking a while for word to get around and Connecticut has been plagued in the past by divisions among groups..
Other states with online groups not in the CALDA network also are underrepresented: for example New Hampshire with an incidence of 46.9/100,000 and 617 reported cases in 2006 has only 83 group members. However the Maine group, with 214 members (incidence 25.6/100,000, 338 reported cases in 2006), is doing well; so is Michigan with 140 members (incidence 0.5/100,000, 55 reported cases). They increased by 22 and 15 members, respectively, since April.
There are another 895 people in non-CALDA state groups and who knows how many in non-state-based groups.
In states which have other, non-CALDA online groups, the CALDA site "points to" the other state groups. This spreads the net a bit wider for potential members, and the non-CALDA groups have grown by over 100 members since April, to a total of 895.
One of the ideas behind the state groups was to encourage activism at the state level. We are trying to keep people in their own state's group, even if they apply to a different group because they see a doctor in another state.
However, if a person has a compelling reason to join a state group different from where they live, we will listen to arguments. But we do want to encourage people to get involved in their own states. There are plenty of groups where membership does not depend on state residence.
We still need local moderators for a number of the groups. If you are willing to serve as a moderator in your state, please let me know.
The states with no moderator are: Arkansas, Hawaii, Idaho, Kentucky, Louisiana, Nebraska, North Dakota, Ohio, South Carolina, South Dakota, West Virginia, Wyoming. These groups are very small (10 or less).
A moderator shepherds the group, keeping an eye on things, admitting and welcoming new members, sharing information, and spreading the word about the group. We could use co-moderators on other groups this is something you would like to do.
The lesson is that we have a potential for a lot more growth in many areas. Please let people know about the groups; I think they can be very helpful.
There are some fliers on the CALDA website under Activism if you can think of a place to put one up (dr. office, vet office, feed store, co-op grocery store, clinic, library). Particularly, let support group members know about the online groups so they can communicate between meetings.
The groups are also valuable if you have an event to publicize or are trying to get people to come to a rally or demonstration. If you are a support group leader in your state, please use the online groups to reach other people in your state. If you post interesting items, I will share them with other states.
Finally, if you are a leader, activist or patient advocate, please plan to attend the Lyme Action Program which is being given on Thursday, October 16 in conjunction with the joint LDA and ILADS conferences October 17-19 in San Francisco. Information is on the CALDA website http://www.lymedisease.org/activism/lyme_events.html
At the moment you have to print out a form and mail it; we will set up PayPal registration soon. We've made a great effort to keep costs down and to design a worthwhile program for you and it would be great to meet you all.
Phyllis Mervine
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
big thanks phyllis for breaking this up JUST FOR ME!!!
other one...1st line i was ok and then the longer paragraphs was just too much for my neuro comprehension skills!!
congrats on the growth nationwide; i'll change my figures in what i send folks!!
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Lots of online Lyme groups - including LymeNet - don't care where you are located. Why do we care? Why do we turn people away if they don't live in the state, and tell them to join their own state group (even groups not in the CALDA network, I should add)?
* State health departments count the number of reported cases in your state. Different states use different kinds of reporting forms for Lyme. They have different criteria for what Lyme is. The health department may do press releases to state media and provide educational materials for healthcare professionals in your state.
* State medical boards are the official bodies that may prosecute your LLMDs for overtreatment and overdiagnosis.
* State legislatures pass laws that govern state medical boards, insurance companies, the health department.
Added to this, state resources are likely to be more convenient to state residents than resources outside the state, just by virtue of being closer. Doctor referrals are an obvious benefit. If you get to the stage of organizing rallies or events, patients on the online state group will be your volunteers and activists. Organizers may use the state online group to get a support group going. Or what about creating a state Lyme nonprofit? You might start with people in your online state group.
The long and the short of it is, this is a bootstrap operation. Just because many of us are sick and disabled does not mean that some knight in shining armor is going to come along to rescue us. More likely some knight in shining armor is going to ride right over us on his way to his own fame and glory. We have to save ourselves. Those more able have to help those less able. We have to pool our skills and do our best.
This state group can help us come together, meet each other and discuss issues. If you start talking, eventually people are going to start thinking about solutions and how to get where we want to be. It may be organizing a fundraiser for one of the Lyme organizations, for research or advocacy. It may be getting a group together to meet with legislators. It may be reaching out to new group members, offering your personal expertise with these diseases. Or you may be educating healthcare professionals. Whatever it is, it is important and needed work.
Please use your online state group to get to know each other by participating actively in it. Invite others in your state to join in. Grow your group. Use your group. Some of the online state groups have topped 100 members! A few have 50 or close to it. Don't just wait for the next impersonal message from the moderator, start talking to each other and let's get something going across this great country of ours!
If you are not already a member of your online state group, here's how to find it. All are set up the same way with the state name and lyme run together as one word: http://health.groups.yahoo.com/group/STATENAMELYME e.g. newyorklyme, except for South Carolina which has a hyphen between the statename and lyme, e.g. southcarolina-lyme. A few of these groups will refer you to another site which is not in the CALDA network.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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