Phyllis Mervine’s Remarks to the CDC (June 11, 2013)

After decades of broken promises and government neglect, a leading patient advocate remains cynical. The following text is excerpted from Phyllis Mervine’s presentation to the CDC during a conference call to their meeting in Ft. Collins, Colorado, on June 11. Her remarks were presented at the invitation of Ben Beard, chief of the CDC Bacterial Diseases Branch, Division of Vector-Borne Diseases (DVBD).

I am joining you today to tell you the concerns of the Lyme patient community and to discuss areas of potential collaboration.

My first collaboration with government was in 1995. NIH invited me to be a patient representative on the advisory panel for the clinical trials for the Klempner study. I hoped the study would benefit Lyme patients. Was I ever wrong! I don’t have time to go into detail, but people promised things they didn’t deliver. Klempner and NIH overstated the conclusions, and the trial ended up hurting the very people we were trying to help. The Lyme patient community severely criticized me for my role, calling me naïve, and maybe I was. I was actually shocked by what happened.

NIH Clinical Advisory

Klempner started the trial thinking that what he was calling “intensive” treatment was unnecessary and that’s what he found. The protocol he chose wasn’t “intensive” by any stretch. All the patients had failed the same or similar courses of antibiotics prior to enrollment. The trial was not even fully enrolled, but that didn’t stop Klempner from drawing hard and fast conclusions from a very small sample size. Not only that, NIH rushed to put up their clinical advisory, making sure people didn’t get an extra single “unnecessary” day of antibiotics. The New England Journal of Medicine expedited the publication of the study. And we started getting more reports from patients that their doctors were cutting off their treatment.

What would people say if we did something like this to cancer patients?

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