NEWS: Phyllis Mervine honored for her Lyme advocacy
LymeDisease.org founder and president Phyllis Mervine has received a Jefferson Award for community service.
Author | LymeDisease.org
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LYMEPOLICYWONK: Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse
Today Senators Blumenthal and Gillibrand joined together to ask the National Guidelines Clearinghouse (NGC) to remove the outdated 2006 IDSA Lyme disease guidelines from their website.(Full text of letter below.) We applaud the Senators for speaking up loud and clear. Their letter voices concerns that the guidelines do not satisfy the currency requirement and asks that the NGC remove the guidelines until the IDSA conducts a review that ensures that the guidelines reflect current evidence-based medicine principles. The Senate letter comes on the heels of a letter from Congressman Smith, Wolf, and Gibson expressing similar concerns. New York Assemblyman Richard Gottfried, who chairs the Health Committee also requested that the NGC remove the guidelines pending a review for currency. Approximately 10,000 people have signed a petition launched by LymeDisease.org calling for the removal of the IDSA guidelines from the NGC.
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LYMEPOLICYWONK: 10,000 Signatures in 9 days–On a Roll!
10,000 Signatures in 9 days–we are on a roll! That is more than 1,000 signatures a day.
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HARD SCIENCE ON LYME: Research Finds Bartonella Transmission from Tick to Host
It has long been known that ticks harbor Bartonella and that humans who have Lyme disease may also have Bartonellosis. However, the actual transmission of Bartonella from tick to host has not been demonstrated until a mouse study by Drs Reis and colleagues was published in May 2011. The study is available free on line for those interested. “This work represents the first in vivo demonstration of a Bartonella sp. transmission by ticks. It . . . corroborate[s] a prospect that ticks play a role in the natural cycles of some of the bartonellae including those pathogenic for humans. Consequently, bartonelleosis should be included in the differential diagnosis for patients exposed to tick bites.”
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LYMEPOLICYWONK: Congressmen Call For Removal of Outdated IDSA Guidelines from National Guideline Clearinghouse
On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back.
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TOUCHED BY LYME: How other pathogens complicate chronic Lyme treatment
Dr. Christine Green will discuss coinfections at LymeDisease.org’s upcoming conference, “Getting Healthy Again: Using Integrative Medicine to Heal from Lyme Disease,” in San Francisco January 22.
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TOUCHED BY LYME: Teaching families how to protect themselves from tick diseases
This RN and Lyme survivor uses puppets, songs, and positive messages to teach children—and adults—how to prevent tick-borne illness
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TOUCHED BY LYME: IDSA gives its response to flood of Facebook postings
Last week, I contacted the IDSA’s media spokesperson for a reaction to the deluge of postings on the organization’s Facebook page. Here’s her response.
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TOUCHED BY LYME: IDSA learns what it means to “go viral” on Facebook
IDSA gets an earful from Lyme patients on the organization’s Facebook page. But will they pay any attention?
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LYMEPOLICYWONK: And, the Number Is? 5,200 Responses! IDSA Guidelines and Patient Preference Survey
Let me thank everyone who responded to the Patient Preferences Survey! We have drawn over 5,200 responses, which is just simply fabulous. We will now start the process of reviewing the responses with an eye toward publication of the results. Our last survey was published in Health Policy, a widely respected peer reviewed journal. Those results now help inform the base of knowledge of the access to care problems that Lyme patients face. Our goal with these surveys is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all to often completely ignored in conversations about Lyme disease. Your willingness to participate in these surveys allows us to do that. So hats off to you for being so vocal and letting us know your views.
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