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Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

If you only share one article this month (or even this year) about Lyme disease, consider this one.

I’ve describe multiple articles lately as ‘must read’ and I’ve got a great many more to catch up on.  This one, however, is a must, must, must share and a must link-to in addition to being a must read.  You’ll see why.

Among the many reasons, I think that as patients we are so mired in the politics and so aware of the background that it becomes impossible for us not to delve (more quickly than we realize) into the politics when explaining our disease to family and friends.  At time, I think we leave them still uneducated about the basics of the disease and still baffled about why we are ranting about the politics.  This is the type of article that can put into context for them (as we may forget to do) why the politics take center stage in our thinking about Lyme and why the politics have such a tremendous impact on our care.  As well as shedding light on the controversies and the depth of the problem, as well as the nature of who we are dealing with.

Review of Lyme disease treatment leaves out patients

She comes from a state with fewer than 10 Lyme disease cases a year. She has not been involved in Lyme disease causes, but rather in funding cancer research.

Yet she has been named “consumer representative” on a panel that will rewrite treatment guidelines for a tick-borne illness with 20,000 reported cases in the mid-Hudson Valley from 2007 to 2013 — and 300,000 nationwide annually. This while federal standards say the panel should include not one but two people to represent the public: “a current or former patient and a patient advocate.”

As it stands now, it has neither.


One comment on “Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

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