CALDA News, Events & Blogs

Stanford doctors who've been investigating Chronic Fatigue are now taking a look at Lyme disease. And another department at Stanford is investigated the symptoms of chronic Lyme. Alix, a Lyme patient who blogs for the "SpiroChicks" website, takes a look at what may be a change of attitude. Full story

2010 CALDA Lymewalks are planned for San Francisco, Los Angeles, San Diego, Sacramento, Ukiah and Humboldt County, California in September and October. The events will help raise the profile of Lyme disease in our state and raise money for Lyme disease research. Full story

"Immune Dysfunction: Its Role in Lyme Disease, Cancer, Allergy and Beyond," is the title of the upcoming naturopathic medical conference October 9-10 in Los Angeles. Renowned Lyme expert Richard Horowitz MD will lead a four-hour session. Full story

The Lyme Disease Association of Southeastern Pennsylvania will sponsor this year's third annual Lyme advocacy training, the day before the LDA/Columbia 2010 Scientific Conference. Full story

When we started publicizing that the 2010 CALDA Lymewalks are raising money for research, many people asked us what kind of research we are funding. It’s a fair question. Here’s a run-down on current research projects funded by CALDA. Full story

Fiber artist/Lyme advocate Nani Lauriano Luculescu takes a CALDA T-shirt and turns it into a stunning piece of wearable art. Full story

As a bedridden teen battling Lyme disease, she sketched dress designs. Now she's staging her own Lyme charity fashion show. Full story

Dr. MacKnight practiced medicine until being disabled by neurologic Lyme disease. She was one of the founders of the International Lyme and Associated Diseases Society and became the group's first president in 1999. Full story

On July 8th, police in Ocala, Florida, made a shocking discovery in a travel trailer at the side of a highway--the bodies of 48-year-old George Strobos and his 49-year-old wife Jonalyn. It turns out the couple, both suffering from advanced Lyme disease, had taken their own lives. Last night, their son, Michael Strobo, of Austin, Texas, made a series of heartfelt postings about his parents on the CALDA Facebook page. Michael subsequently gave me permission to re-post his writings here. Full story

What are we to make of the recently launched journal “Ticks and Tick-Borne Diseases” that includes on its editorial board five members of the IDSA Lyme guidelines panel? Dr. Wormser, who chaired the IDSA Lyme guidelines panel, is an associate editor of the journal. Do you think that they might have a bias or might exclude others points of view? If so, is this peer review or is it censorship? Full story

The Vancouver Sun says: "It's a controversy with a bite." Full story

The book "Insights into Lyme disease treatment," which interviews 13 Lyme-treating practitioners, has been translated into Spanish. According to the publisher, it is the first book of its kind available to Spanish-speaking Lyme patients. Full story

Sacramento News & Review reports on a recent case of tick-borne tularemia in a local eight-year-old boy. Full story

Some people don’t think that evidence-based medicine is about evidence. They think it is about power and ownership. I was a bit stunned to read Cerar et al (coauthor Dr. Wormser) take on the author of a meta-analysis on Lyme disease by boldly declaring that her conclusion was “not evidence based.” Kind of makes you wonder whether evidence is in the eye of the beholder and whether Cerar and Wormser have authority to settle scientific debates by proclamation of what constitutes “evidence”. Much as a scornful Humpty Dumpty did in Alice in Wonderland: "When I use a word. . ., 'it means just what I choose it to mean – neither more nor less." "The question is," said Alice, "whether you can make words mean so many different things." Does scientific debate really boil down to WHO says and how LOUDLY they say it? Should it? More after the jump. Full story

Linda Olley, a registered nurse, Lyme patient, and leader of the Harrisburg, PA, Lyme disease support group, weighs in on why PA's proposed Lyme doctor protection bill is so desperately needed. Full story

Parents magazine ran an informative article on Lyme disease in their July 2010 issue. They did a pretty good job but there were a few points that needed a bit of clarification. Full story

Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t. Full story

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. Full story

The San Jose Mercury News writes a follow-up story on Bart Fenolio, who last December was told he had two months to live. Fenolio has been in a nursing home since then, receiving Lyme treatment. Now he's well enough to go home. Full story

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. Full story