Topic: Press Release for YOU to use to raise awareness NOW for Lyme Disease Awareness Month
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Please use this!! Make ANY changes you want, including substituting in your own name and group and including any state data you know. Post back here if you are successful so we can have a REAL Lyme Disease Awareness Month in May. It's up to ALL of us. Post back so we don't duplicate efforts.
Press Release - For Immediate Release Contact person Phone
May is the peak of the nymphal tick season. These immature ticks cause most human cases of Lyme disease, since they are the size of poppy-seeds and people don't even realize they have been bitten. An average of 12% of local ticks are infected with the bacteria that cause Lyme.
``Many people have Lyme disease and don't know it or can't get treated locally for it,'' says patient advocate Phyllis Mervine, president of the nonprofit California Lyme Disease Association (CALDA), an affiliate of the national Lyme Disease Association (LDA). ``Tests are not always definitive and doctors prefer less controversial diseases like MS, fibromyalgia, chronic fatigue, or even psychiatric illness, which can look identical to Lyme, so people never get treated appropriately. The alternative is traveling long distances to see a Lyme specialist.''
If not treated promptly, Lyme disease can lead to a debilitating chronic illness that attacks the brain, heart, joints, and other organs and causes extreme fatigue, headaches, depression, panic attacks, OCD, pain, and other symptoms. Although debate continues over the best treatments for chronic Lyme, studies show it often responds to longer treatments and combinations of drugs.
There are two ``practically opposite'' standards of care for diagnosing and treating Lyme, which causes confusion, Mervine says. CALDA works closely with the International Lyme and Associated Diseases Society (www.ILADS.org), whose published peer-reviewed guidelines recommend an individualized treatment plan that sometimes includes long-term antibiotic treatment. As part of their educational mission, CALDA offers $800.00 scholarships to healthcare professionals who attend the ILADS and LDA annual scientific conferences for the first time. This year both conferences will be held near Boston on October 26-28.
The other guidelines are published by the Infectious Disease Society of America (IDSA). CALDA is supporting a civil investigation of IDSA by the Connecticut Attorney General for possible antitrust violations in the formulation of their guidelines, which recommend no more than three weeks of treatment and deny the existence of chronic Lyme. After the IDSA guidelines were published in December, 2006, ILADS wrote and requested their immediate retraction, saying that the guidelines committee selected research that agreed with their opinion and ignored opposing views. Of 18,537 articles about tick-borne diseases listed on National Library of Medicine website, the committee looked at only 400, the letter said.
ILADS president Dr. Raphael Stricker worries that the IDSA guidelines do not offer an answer for the thousands Lyme patients left with a poor quality of life after their three-week treatment.
``Many recommendations in the IDSA guidelines are based on the weakest evidence, namely opinion rather than scientific fact,'' said Dr. Stricker. ``The guidelines make doctors afraid to diagnose or treat Lyme disease, and this chilling effect harms patients and patient care.''
Mervine adds that insurance companies often use the IDSA guidelines to deny reimbursement of the cost of treatment, and medical boards use them to discipline doctors. California is one of the few states with a law protecting doctors who treat people with chronic Lyme, provided certain conditions are met, but many doctors shy away from Lyme because of the controversy. The resulting difficulty in finding a doctor and desperation drive many patients to experiment with unproven and sometimes risky alternatives, Mervine says.
CALDA publishes a quarterly lay journal, the Lyme Times, which can be ordered on the CALDA website, www.lymetimes.org. There are online groups for almost every state at Yahoo Groups where members share support and information. Healthcare professionals interested in the scholarship to attend the ILADS/LDA conferences should call Lee Lull at 415-927-9553 or email [email protected] for an application.
About California Lyme Disease Association (CALDA) (You can substitute YOUR group info) CALDA, an affiliate of the Lyme Disease Association, is a non-profit corporation that acts as the central voice for all tick-borne disease issues in California and a supporting voice for national issues. Through advocacy, research and education of the public and health care professionals, CALDA seeks to prevent tick-borne diseases, encourage early diagnosis, and improve the quality of healthcare provided to people with tick-borne diseases. CALDA publishes the Lyme Times, a lay journal that is distributed nationally and internationally. For more information, visit www.lymedisease.org
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I hope someone is going to use this!
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
posted
Thx, Phyllis -- you've made it easier for us to try. Will see what I can do this week. -- Robin
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
contacted our local paper today. thanks for making it easy for us, phyllis. also walked into our state rep's office today and asked that he CO-SPONSOR HR 741.
will keep you posted.
timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Can you let me know the paper(s) you are covering? I am keeping a log to give feedback to the people on CaliforniaLyme so we won't get duplication of effort.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sent email to our local paper. They did do a story last year.
I sent your article to them this year to help get the ball rolling.
They seem to like to write their own article but will use resources from others.
Thanks for making lyme awareness month lyme friendly. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Am very pleased to announce that three San Francisco hewspapers will pick up the story for May Lyme Awareness month! We will combine the state press release plus the local angle.
So far, we have a Lyme infection report from the hillside overlooking the children's playground in GG Park and also from a backyard in Glen Park area. And a tick found on a dog near the public restroom down at the beach.
[ 21. April 2007, 01:16 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I got an article in a fourth paper today, a very important medical one. Had a very long chat with the person who will be reporting.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
when you do send the article in, make sure to follow up with a phone call because otherwise the article is sure to get lost.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic