You can download the rubric here. You can also view videos, including one of yours truly, explaining why patient involvement in research matters.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.
The National Institutes of Health (NIH) has invited public feedback on its tick-borne disease research…
This is a little off topic for my blog, but something that is of high interest to patients. Patients ask all the time about the effectiveness and safety of “expired” drugs. A recent article that appeared in the Medical Letter examines the issue in detail. The article notes that generally manufacture expiration dates merely reflect the fact that the drug is “stable” at that point, they do not reflect when the drug becomes unstable. The conclusion of the article indicates that outdated drugs may be effective and safe for at least 5 years after the expiration. Notable exceptions include liquid suspensions and epinephrine in Epipen, which are not stable over time. The article also notes the following: " There are no published reports of human toxicity due to ingestion, injection or topical application of current drug formulations after their expiration date. Renal tubular damage has been reported after use of degraded tetracycline in a formulation that is no longer available (REF 2)." Other sources contain warnings about expired doxycycline, which may (or may not) be based on this outdated tetracycline warning, but patients may want to check with their doctors when using expired doxycycline to be on the safe side.
Have you ever wondered how many patients with Lyme disease have a rash? You would think the answer would be straight-forward. It’s not. Estimates range from 27-80%.
Dr. Ben Beard of the CDC met with directors of CALDA on March 10 as part of an effort to reach out to Lyme patient groups across the nation. After meeting with CALDA, he attended the regularly scheduled meeting of the California State Lyme Disease Advisory Committee, which was created under legislation sponsored by CALDA to encourage dialogue with the California Department of Public Health. If you have not met Ben Beard before, he is both engaging and likable and has a measured tone. CALDA believes that respectful dialogue is essential to moving forward for the Lyme community, and we are pleased with this first step. We also believe that patients need to be meaningful participants in any solution for Lyme disease. We raised a number of concerns about the CDC's Lyme disease policies, including the need to treat to cure disease, the education of physicians and government funding of research. Here are the issues that loom large.
Merrill Goozner at Gooznews cites a recent JAMA article by Tricoci showing that nearly half of the recommendations in treatment guidelines are not based on clinical trials, but rather, are based on no more than the expert opinion of those on the panel. This leads to the rather obvious conclusion that evidence based medicine is largely bankrupt. Only 11% of recommendations for heart disease were based on multiple randomized trials.
Arthur Weinstein's role on the IDSA's Lyme guidelines review panel was short lived. Today's list of panel members posted on the IDSA website excludes him. Patient groups were alarmed when he was included in the IDSA's panel list posted by the IDSA on Monday. Weinstein was at NYMC with Dr. Gary Wormser, who was the chair of the 2006 IDSA guidelines panel, which the Connecticut Attorney General investigated and found had been riddled with conflicts of interest , excluded divergent points of view and suppressed scientific evidence. Weinstein was a co-author on the Klempner study, on the safety monitoring board for the vaccines, and involved in the flawed western blot testing (Dearborn Conference). His removal from the panel is a step in the right direction for Lyme patients.
