LYME DISEASE - AN URGENT APPEAL FOR REFORM: We Need Your Help!

The Lyme Disease Treatment Guidelines, authored by the Infectious Diseases Society of America (IDSA), are currently undergoing review. While there are multiple perspectives regarding the best treatment protocols for Lyme disease, and two professional medical societies that specialize in the diagnosis and treatment of Lyme disease, the CDC and the nation's insurance companies have historically selected the guidelines authored by the IDSA to be the sole voice for treatment advice for this highly complex and insufficiently understood illness. This has laid the groundwork for a lack of adequate treatment for hundreds of thousands of Lyme disease patients who have endured, and will continue to endure serious, persistent illness.

HOW CAN YOU HELP?

For your voice to be heard, it is recommended that you send a letter to your Congressional Representatives. To find your legislators CLICK HERE and enter your zip code. Deadline is April 9, 2015.

SAMPLE LETTER:

Dear Senator /Congress member: (FILL IN APPROPRIATE NAME) I (or We) seek your intervention to ensure that the new treatment guidelines for Lyme disease, currently in the process of being drafted by the

Infectious Diseases Society of America (IDSA), will result in guidelines that reflect a complete, fair, transparent, and trustworthy process in accordance with the Institute of Medicine's "Standards for Developing Trustworthy Clinical Practice Guidelines," and also be free of conflicts of interest and demonstrate an inclusion of the entire body of scientific evidence.

I (or We) ask for your attention to this matter because historically the IDSA treatment guidelines have been the only ones endorsed by the NIH and the CDC. Since 2002, IDSA guidelines have been limited and restrictive,

resulting in the failure of patients to be informed about their treatment options and the use of such guidelines by insurance companies to deny essential medical care to patients with persistent Lyme disease symptoms, which, in many cases, leads to long term suffering and disability. To ensure the safety and well-being of your constituents, I (or We) ask you to please intervene.

I (or We) respectfully request that you:

1) Please send a letter to the IDSA Directors reminding them that their review should be unbiased and representative of all available science (sample

letter is below and IDSA Directors are listed in APPENDIX E)

2) Please send a copy of your letter to the CDC, so they will be aware that biased guidelines might initiate further inquiry.

Background and resource information is attached in a pdf file, for your review.

Your immediate attention to this issue would be appreciated as the IDSA comment period closes on April 9, 2015.

Sincerely,

Patient/advocate to fill In your name and affiliation here



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