posted
I get lots of emails from organizations. Yesterday they were all asking what I was interested in, like a little survey, so I told them: spreading the word about Lyme/coinfections.
Then I picked up the phone and called a big one about the situation. My thinking is, we can educate the public and build awareness about what's going on. They were listening.
So what about that approach: contacting organizations about Lyme/co's that would have some interest in the issue because it will affect their members?
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
What sorts of organizations? I know there are some big political action organizations out there if we could get their attention. Another thing would be to try to get the attention of some of the widely distributed radio personalities, more specifically I am thinking some of the Air America people might be interested in the story if the just learned more about it. Rachel Maddow, Randi Rhodes, there are a bunch of them that tend toward the more liberal side, which is what we need. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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posted
Karen - all kinds of organizations are possible - environmental, activities, various age groups, animal groups - I think it's wide open, because they can all be affected. I started with three yesterday. It's easy - pick up the phone and call one in your area and get the ball rolling - a newsletter article, etc.
I like the radio idea too - been thinking of that as a good medium. If any of you have talk show radio and want to call in and talk about the situation, that's a good way to get people notified.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
What about reaching out to environmental groups like Sierra Club. They have local chapters that have lots of hiking events....ergo they probably have exposure to ticks. Potential alliance? Just a thought.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
Yes, docjen, I think the Sierra Club is a good one! All we have to do is pick up the phone and call our local chapters, to educate them, to alert the outings folks, to get an article in the newsletter, etc. Exposure to ticks? You bet!
Posts: 13117 | From San Francisco | Registered: May 2006
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daise
Unregistered
posted
I like this line of thinking, especially radio shows!
Sierra-great!
Local hiking groups: out West, almost no one knows about Lyme.
Farmers in the Midwest and West don't know, for the most part, either.
posted
I have already sent off a few e-mails to several of the radio personalities, including Rachel Maddow and Angie Coiro (she is local to San Fransicso, not sure if she is syndicated or not) - Rachel Maddow strikes me especially as someone who might take an interest in our cause, she has a history of aids activism, so knows how badly the government can ignore it's sick constituents - http://www.rachelmaddow.com/
Here is a list of lefty radio personalities from our bay area station - http://www.green960.com/pages/lineup.html many of them are syndicated, some with Air America, some elsewhere.
Here is a list of Air America shows/personalities - http://airamerica.com/shows - if anyone knows which ones might be most likely to take an interest, that could be helpful. I am only familiar with a few who are on midday on our local station. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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bettyg
Unregistered
posted
....ROBIN, OUTSTANDING IDEA and way to get people's imagination out there working!!
also STATE/COUNTY CONSERVATIONS staff ***************************************
talk shows ... remember MAY is LYME AWARENESS MONTH!
always mess this up; is it MAY 12 or 13th
international LYME, CFS, FIBROMYALGIA DAY
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Robin, great idea, but not always received the way you would expect. One of our people went to a Sierra Club chapter meeting -- they had actually invited her -- and when she started to talk, someone interrupted and asked how long she was going to continue, and her information was detracting from their lunch (it was a lunch meeting). Someone else was very rude also, and she decided to leave. It was really amazing!
Not to suggest we shouldn't try, and I have given my slide show to realtors, employees of a timber company, and community groups and it was well received.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
phyllis,
how RUDE of the group where one of your members went!!
i was wonderfully treated other night at deer task force meeting i went to at library; still gathering info to send our chief of police who will pass on to FULL committee!
even took back my lyme handouts i give out when i set up a table!
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posted
Phyllis - good to hear your slide show has been well received by some. I agree with Betty - let's keep trying. We actually have nothing to lose, and uninformed people have everything to lose - their health and their lives.
I think more people need to start calling the Sierra Club to let them know there's a big problem that's developed in the environment. If they wish to continue their Club mission, which is to protect and enjoy the environment, then they need to learn what's happening with it.
I think warnings need to go out in chapter newsletters. The Club runs a lot of outings, too, and there is the national Sierra magazine. They could run a good article.
Posts: 13117 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"What about reaching out to environmental groups like Sierra Club. They have local chapters that have lots of hiking events....ergo they probably have exposure to ticks. Potential alliance? Just a thought."
I wrote a letter and sent it out last night to Maryland Chapters because of your suggestions. There were LOTS of people in these clubs and LOTS of emails to send... so maybe if you have 2 people in one state you can share the sending out part to make it less burdensome.
I will post the letter below as an example.
From it I've had one response so far... from a reporter who will be doing an article on Lyme now... and they are wanting some quotes. GREAT news.... and we can use the contacts too.
Feel free to use my letter and adjust it to fit your state and your circumstances. It is easier than writing one from scratch.. but certainly write one from scratch if you'd like.
Several months ago I approached the Appalachian Trail Clubs and they were kind enough to put the information on their website which got quite a few hits and got me more emails to answer. But they did make calls to their legislators... in Virginia and Maryland.. which we needed.
And hopefully everyone learned from the effort too.
So thanks to Robin 1234567 and everyone for the suggestion.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sierra Club Members,
As you may know, Lyme disease cases doubled last year in Maryland and the epidemic continues to grow unchecked throughout the state.
We are currently 2nd highest in the country (again this year) in the number of new reported cases, behind Pennsylvania, and we are just entering the prime tick season.
Recently, two new tick borne disease have been discovered in our state. They can be transmitted to humans through the bite of several species of ticks. A disease caused by a strain of Borrelia (Borellia lonestari) similar to the one that causes Lyme disease (Borrelia burgdorferi) was detected in animals and humans in Maryland. It is referred to as STARI (Southern Tick Associated Rash Illness) or Master's Disease. STARI is thought to be carried mainly by the lone star tick, however, it has been detected in the deer ticks also.
The standard Lyme disease tests on the market do not detect the presence of STARI and have also been proven to miss 75 percent of people who are infected with Lyme disease (burgdorferi), yet there are many in the health care profession who continue to inappropriately depend on the test results to make or break a diagnosis.
Often people who are infected are refused treatment as a result of these unreliable tests or they are misdiagnosed and never know they are suffering from treatable tick borne illnesses.
The most recently discovered tick borne disease, caused by a Rocky Mountain Spotted Fever like organism, has been discovered by the US Army Research team working out of Aberdeen Proving Grounds.
There are no tests able to detect this new RMSF-like disease in humans, making it especially important for residents to continue to do "tick checks" and use precautions when outdoors.
Please note- simply handling ticks can expose a person to RMSF.
Untreated or misdiagnosed Lyme and tick borne diseases can present themselves in many forms, especially in the late or chronic stages.
Arthritis, Lou Gehrigs (ALS), Parkinson's, MS, fibromyalgia, chronic fatigue, Lupus, depression, anxiety, autism, dementia, ADD (especially in children) and auto-immune diseases are commonly found to be caused by a combination of undiagnosed tick borne infections.
These diseases can be treated by an experienced physician if they are detected.
Chronically ill Lyme patients in Maryland have also been found to have additional vector borne diseases complicating their symptoms and worsening their condition, such as:
Anaplasma phagocytophilum- Human Granulocytotropic Anaplasmosis (HGA)
Ehrlichia chaffeensis- Human Monocytotropic Ehrlichiosis (HME)
Morgellons
Rocky Mountain Spotted Fever
Tularemia
The Lyme Disease Education and Support Groups of Maryland are manned by a few chronically ill volunteers who have either experienced Lyme and coinfections themselves and/or who have family members who have been affected.
We have worked as hard and fast as we can to get the word out to residents and make positive changes in the way these diseases are addressed.
Currently we are looking for support (NOT monetary) from residents in the state who can join us when we have action alerts concerning polices that may affect Maryland resident's health.
We have been working actively with the Lyme Disease Association, a national, all volunteer, non-profit with affiliates in 36 states.
Sick patients at a grass roots level nation-wide are depending on each other to help get bills passed which would improve the outcome for people who are negatively affected by tick borne diseases.
Other than that cooperative arrangement, we are on our own here in our attempts to educate and support our residents.
I am writing to you today, in part because of your involvement in the outdoors and the desire on our part to be sure you are fully informed, as you are what we call "high risk" in terms of exposure.
I also would like to ask if you would join us with our long range plans to educate people in Maryland and across the country by passing along tick borne disease information.
As you know the more people pushing together to get the word out there, the more likely changes will be made for the better.
Would it be possible to add your members to our mailing list- which is not shared with others- in the event we need residents to drop a note, sign a petition or make a call to legislators to support tick borne disease legislation?
If you prefer, I can add one member to the list and ask them to pass along the information.
It would also be very helpful if you could share the most updated Lyme and tick borne disease educational information with your members too, either on your websites, on a newsletter or by email.
I am providing links below with updated information about Lyme and tickborne diseases.
The most groundbreaking news is concerning the CT Attorney General's recent press release.
In it you will see the results of their 2 year long investigation into the Infectious Disease Society of America (IDSA) for monopolization, anti-trust violations, exclusionary conduct directly related to their Lyme disease guidelines.
To summarize, they have been forced to replace all of their Lyme disease guideline panel members (never can serve in that position again) due to potential corruption of the guideline process.
The Attorney General determined their Lyme disease treatment guidelines were "seriously flawed" and the IDSA was guilty of multiple and significant "conflicts-of-interest".
Hopefully, with this long awaited ruling we will soon be able to get chronically ill Lyme patients adequate treatment and they can be reimbursed by insurance companies.
For your support and assistance I have nothing to offer in return other than to send your name in as an organization supporting Lyme disease legislation and ask the Lyme Disease Association to please list you as such on their website.
Thank you for considering my request for help. I look forward to hearing from you.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, Oh, Oh!
An invaluable tool for composing your letter is right here at the link below. And it was provided for all of us.... by one of our lovely LymeNet members... Melanie.
If you look on the left on the home page you will see a section with State Statistics.
Melanie has researched and combined great facts/figures on each state to be used as needed. What a life-saver this is when writing any literature up for others.
posted
Looks great, TC! And thanks to Melanie too for all her hard work. I looked at her site and there's a lot of info there that the Sierra Club could look at.
I'd like to encourage folks to contact your local Sierra Club chapters and ask them to publish some information in their chapter newsletters about the immanent dangers of Lyme/coinfections to their members et al.
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