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LYMEPOLICYWONK: Working to improve the diagnosis of Lyme disease
The Society to Improve Diagnosis in Medicine (SIDM) is a non-profit organization that focuses on…
IDSA Hearing–Reflections
The IDSA Lyme disease guidelines review hearing on Thursday was an historic event both in medicine and in the Lyme community. It is the first time an organization has been required to hold hearings and review treatment guidelines that were created by a panel with conflicts of interest. It is also the first time that a broad debate of both sides of the Lyme controversy over diagnosis and treatment with physicians and researchers has been held.
LYMEPOLICYWONK: Study Finds Coinfections in Lyme Disease Common
The largest survey of chronic Lyme disease patients was recently published in PeerJ. LymeDisease.org conducts these large-scale surveys to collect information directly from Lyme patients. Although the incidence of coinfections in chronic Lyme disease is unknown, many people assume that co-infections are rare in Lyme patients. The fact is no one has asked the question. So we asked over 3,000 chronic Lyme patients whether they had coinfections that were confirmed by laboratory tests.
When is a public hearing not public—the sequel?
The IDSA settlement agreement calls for an open public meeting which must be aired live over the internet. I have serious concerns about the restrictions the IDSA is imposing on people who want to watch the hearings and am discussing these with the Connecticut Attorney General’s office, but meanwhile I want to provide you with information so that if you want to watch you are prepared.
LYMEPOLICYWONK: Do antibiotics help patients with Lyme disease who are also diagnosed with MS?
Periodically, I post information about some of the findings from our big data project, MyLymeData….
LYMEPOLICYWONK: The CDC Definition of HIV: Does History Repeat Itself?
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.
