Here’s to the crazy ones.
The misfits. The rebels.
The troublemakers. The round
pegs in the square holes – the
ones who see things differently.
They’re not fond of rules and
they have no respect for
the status quo. You can praise
them, disagree with them,
quote them, disbelieve them,
glorify or vilify them.
About the only thing that you
can’t do is ignore them.
Because they change things.
(Apple ad)
Doing a guideline review process correctly and vigilantly is important. It is also a difficult goal to pull off. The 2006 IDSA guideline development process was flawed, as Connecticut Attorney General Richard Blumenthal found in the antitrust investigation. That panel was hand-picked to represent a particular viewpoint on treating Lyme disease and it cherry- picked the evidence or interpreting the evidence in a manner that supported a preconceived viewpoint. When science is unclear or unfolding rather than acknowledging that fact, guidelines sometimes rely on 'expert opinion' to fill the evidence gaps. This is a big problem because evidence based guidelines are presumed to be based on evidence, not opinion. Substituting the 'expert opinion' of someone on a guideline panel is no better, (actually, it is worse) than leaving the matter open and allowing the treating physician to use their own expert opinion.
Lyme disease is a controversial illness—as anyone with the disease knows. The controversy arises because there is medical uncertainty about the best way to diagnose and treat the disease, poor quality diagnostic tests, and very little treatment research. Out of this uncertainty, two approaches to treating the disease have emerged: one advanced by the Infectious Diseases Society of America (IDSA) and the other advanced by the International Lyme and Associated Diseases Society (ILADS). But both of the approaches are not equal in the eyes of patients. One leaves patients without treatment options when short term therapy fails, as it does all too often. The other provides patients with the option of receiving additional care.
I don’t know about you, but I have watched wide-eyed and breathless as the Centers…
We recently received a response from the NIH regarding our concerns about the NIH tick feeding study and the risk of tickborne infections from the larval ticks that researchers intend to place on patients to feed. We have written the NIH about this several times. Our latest letter focused on the newly identified pathogen, Borrelia miyamotoi, which can be transmitted to larval ticks through the mother's eggs. We asked the NIH to tell us what bacteria they test for in the larval ticks to ensure that patients in the study are not at risk. According to the NIH, the following pathogens are screened for: Borrelia burgdorferi, Babesia microti, Anaplasma phagocytophilum, Borrelia miyamotoi, Bartonella spp, Rickettsia sp., deer tick viruses and orbiviruses. We are glad to see that these pathogens are being screened for but remain concerned that unidentified pathogens nevertheless place patients at risk in the study.
Did you know that a goal of Healthy People 2020, a collaborative effort of a number…
LymeDisease.org board member Dr. Christine Green was among the speakers at our recent MyLymeData conference…
