Author | LymeDisease.org
CALDA and Time for Lyme (TFL) want to thank everyone for their help on the petition asking Connecticut Attorney General Blumenthal to further hold the IDSA accountable. Although the petitions were limited to Connecticut residents and the timing fell in the midst of school graduations with all of the time those entail, approximately 2,500 signatures were collected and are being sent to him.
What do Representatives Chris Smith and Frank Wolf have in common? They know how to ask the right people hard questions. What do the IDSA, the NIH, and the IOM have in common? They’ve honed the skill of the artful dodger. Representatives Smith and Wolf want to know why the NIH “stepped back” from its charge to run a state of the science conference and handed that hot potato to the IOM. One big difference between the NIH process and the IOM process? The NIH process considers bias a conflict of interest, meaning IDSA folks wouldn’t be sitting on an NIH panel. But, drum roll. . .the IOM permits panels to be biased and coincidentally has a panel that consists almost exclusively of IDSA folks, 4 of 6 panel members. Oh, and one more thing, the IOM is not technically considered to actually be ‘the government’. This is a picture perfect example of plausible deniability. The NIH didn’t stack a panel. The IOM did with IDSA folks. But, hey, they like bias and they are not accountable, are they? A copy of the letter from Representatives Smith and Wolf to Dr. Francis Collins of the NIH together with Collins response can be downloaded at the bottom of this blog post.
When the eight-year-old boy bent his head down, his mother noticed an odd little bump under his hair. Looking more closely, she saw it was a tick. “We live near wetlands,” she explained to me. “We pull ticks off our dog all the time. No big deal.” She plucked out the tick with tweezers, threw it away and forgot about it.
Just last week, southern California Lyme patient Meredith Hiney heard about the upcoming 2010 CALDA Lymewalks, and “instantly knew” that raising money for Lyme disease research was something she wanted to do. Following the easy directions on the CALDA website, she set up her own fundraising page, emailed the link to family and friends, and in less than a week raised more than $1500 for Lyme research. Who is Meredith Hiney, and why is she fundraising like the energizer bunny?
This book is not about how to get sick or how to stay sick. It's about how to "be" when you are sick. How to have a worthwhile existence, finding meaning, purpose and joy, even when chronic illness seems to have stolen your life away.
The governor of Massachusetts has signed a bill providing protection to doctors who prescribe long term antibiotics for Lyme disease. The new law gives doctors discretion to diagnose and treat according to their best clinical judgment.
Anne Mears, a Lyme activist from southern California, shares practical advice about setting up a Lyme display at a public event.
There is a big debate going on now about how to control health care costs. (Surprised?) Obama has been relying on the Dartmouth Atlas project by John Wennberg to support his assertion that there is enormous waste in the medical system that varies by geographical region that needs to be curtailed. Gardiner Harris, a reporter for the New York Times, has taken issue with this assertion and lobbed criticism at some of the underlying assumptions in the Dartmouth Atlas project. Congress has started looking to control costs by enforcing reductions in higher costs areas like New York. Not so fast says the NY Times. Increased cost may also reflect higher quality care and before we act on data, we need to make sure we have it right. Merrill Goozner, has a good post on Gooznews dissecting the debate. I have followed Wennburg’s work for years and offered my 2 cents on his work and its implications for patients who need to have treatment options available. This debate is at the core of quality healthcare and individualized patient needs. My comments posted on the Goozner site as well as links for all follow the jump.
I have to say, I have not heard encouraging things about the IOM process. Most folks think the IDSA simply plucked a friendly forum to reaffirm its beleaguered Lyme guidelines and the tainted Lyme review panel process. The big question is: Does this process have any substance or is it just a matter of going through the motions? Is anybody listening on these "listening" phone calls? Is the IOM offering to listen to anyone who cares?
Kris Newby, senior producer of the awarding-winning Lyme disease documentary, recently addressed the Institute of Medicine's listening session for "The State of the Science" of Lyme and other tick-borne infections. She observed that Lyme research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last 20 years–while we still have no reliable testing and no effective treatments for patients who fail the IDSA protocols.
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