ILADS Submits
Pop the cork off the Champagne and let the fireworks rip! ILADS made its document submission for the IDSA Lyme disease review panel. And the weight of evidence was staggering–
Author | LymeDisease.org
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Panel stacking: It’s not magic. It’s deception
The IDSA trots out bad faith move after bad faith move to ensure that their Lyme disease guidelines are rubberstamped quickly and quietly. IDSA took first things first–which means stacking the panel has been front and center in its cross-hairs for some time.
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Patients know enough medicine to smell a rat
Most guidelines panels are heavily populated by academics. Why is that? Take the IDSA guidelines Lyme disease panel in 2006—all academic researchers. Researchers are good at science, but what about medicine? Does good science make good medicine? Not necessarily.
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TOUCHED BY LYME: Kids need to feel safe and protected, and so do their families (Guest blog by Sandy Berenbaum)
When I started my psychotherapy practice 22 years ago, specializing in adolescents and families, I recognized that, as a mother and as a psychotherapist, the core of my philosophy about children is that they need to feel safe and protected. Actually they need to be safe and protected. Four years later, when I started seeing children and adolescents with Lyme disease (one year after my own diagnosis), I realized that, in the world of Lyme, many patients do not feel safe and protected.
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TOUCHED BY LYME: When a medical problem calls for non-medical help
I recently received a phone call from a mom whose two teen-aged sons are terribly ill with Lyme and coinfections. In addition to all the medical and emotional issues her family is dealing with, she’s also concerned about schooling, since one of her sons is too sick even for homebound instruction.
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TOUCHED BY LYME: Lymelife for Dogs
There’s a scene in the Lyme documentary Under Our Skin, where somebody demonstrates how to “flag” for ticks. With his trusty long-haired dog trotting through the woods beside him, the man drags a big white cloth alongside the trail, and shows the camera how quickly and easily he picks up ticks. I’ve seen the movie several times, and whenever I get to that part, I silently scream at the guy, “What about the dog? Take care of the dog!”
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IDSA Lyme disease review panel date set for July 30th! New calendar attached
The IDSA has set the review panel date for July 30th. None of the other calendar dates have changed. The applications for the panel are due April 17th, document submissions are due April 24th, and selected presenters will be notified by May 15th. If you intend to apply to present or are making a document submission, please let me know and send me a copy of your application or submission at johnson.lorraineb@gmail.com
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POLITICAL ACTION: History of Federal Lyme Legislation, Part 8
You never pass legislation in a vacuum. The backdrop for the ongoing efforts to pass the Lyme bills included, in August 2005, Hurricane Katrina. In September, 150,000 people gathered in Washington DC to protest the Iraq war and the US death toll approached 2,000. Then in October, a grand jury indicted “Scooter” Libby, Vice President Dick Cheney's Chief of Staff, on felony charges. 2006 brought new challenges and distractions for Lyme advocates, too. With all these pressing issues to deal with, how could we expect legislators to fit Lyme disease legislation into their calendars?
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JAMA to conflict of interest breaches—silence is golden
JAMA is having a personality conflict with itself. After publishing 3 very strong articles on the ethics in guidelines development, it has asked those who question ethics violations in JAMA’s publications to keep quiet about them. In JAMA’s view, conflict violation in its journal should be discussed only if and when JAMA decides to discuss them. This sounds like a policy designed to silence whistle blowers at a time when we need more whistles and fewer muzzles. Not surprisingly, the Association of Health Care Journals has come out against JAMA on this one.
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POLITICAL ACTION: History of Federal Lyme Legislation, Part 7
It was 2005, the first session of the 109th Congress. There were two competing bills in the House, and no Senate bill. No one knew what the senators would do. All we could do was wait… and hope. Finally, we had our answer, but the landscape was shifting. It might be impossible to pass legislation, even if everyone united behind a single bill.
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