ldoadmin

In another post, I pointed out problems with the composition of the IDSA panel—namely, that the IDSA panel is biased toward the IDSA perspective because physicians who treat chronic Lyme were entirely excluded and some of the panel members have known biases. A number of patients have contacted me who want to do something. This post will let you know who, what, and where you can write to have the best chance of getting your voice heard.

Over the years in the trenches, Dr. Stricker and I have written a number of letters jointly or individual to the New York Times. Not a one has been published. And, we are not the only ones–leading some patients to question what it is the NY Times has against Lyme patients. It's enough to make one wonder about fair and impartial journalism. A number of patients groups have written the NY Times Ombudsman to protest its uniformly one sided view of Lyme disease. Clearly, the topic of Lyme is timely, controversial and newsworthy. Yet only one side seems to merit the cost of ink by the NY Times.

If you have not read Pam Weintraub's Disappearing a disease: when guidelines are biased, patients suffer I suggest you take a breath and head over to her blog on Psychology Today. Pam Weintraub is the author of "Cure Unknown: Inside the Lyme Epidemic", the seminal book on the politics and science underlying Lyme disease. I recall telling a friend and attorney who simply did not understand why there should be a controversy when so many people were ill–why would any physician, those men in the white coats, deliberately leave patients ill, untreated, and without hope. Since when did medicine become a science of closed doors, double locked against the needs of patients?

The IDSA review panel has announced that the period for the public to submit information to ensure that all points views are taken into consideration is open. Submissions must be received by April 3 and should not exceed 5 pages. The public hearing date has been set as April 27th in Washington DC area. Information on how to apply to be a presenter will be forthcoming.