LymePolicyWonk: IDSA Lyme disease survey results out! What’s important to patients?

24 Apr
Outcomes important to patients

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too. Continue reading

TOUCHED BY LYME: An easier way to comment on IDSA’s Lyme review

07 Apr
Ira Auerbach

The IDSA has devised a complex method for accepting public comments. You are supposed to specifically discuss their Project Plan, which includes more than 80 different questions. You are supposed to cite page and line numbers. You’re not supposed to recount your personal experiences with Lyme disease. Some patients have tried to comment and have given up in frustration part way through. Stay calm. Help is on the way.
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TOUCHED BY LYME: One patient’s comments to IDSA

06 Apr
julie engle pic

The IDSA is accepting public comments about its Lyme guidelines review process through April 9. Rules for commenting require you to cite page and line numbers of the IDSA’s Project Plan. Molecular biologist/Lyme patient Julie Engle submitted the following comments. She invites you to use them to inspire your own comments to the IDSA. Continue reading

Take our guidelines survey & give comments to IDSA

02 Apr

The IDSA is reviewing its Lyme guidelines. (The ones that deny proper medical care to people with Lyme disease.) Their handpicked panel excludes Lyme patients and Lyme-treating doctors. Take our survey now to let the IDSA know your views. We’ll share results with the IDSA, journalists, politicians, health policy makers, and the public at large. Time is short. Do it now. Continue reading