I’m not very knowledgeable about lyme issues, so this is probably my ignorance, but please can you explain why “post-treatment lyme” makes it look political? My understanding is that some people seem to develop ME/CFS type symptoms following Lyme disease. Is the term “post-treatment lyme” considered unhelpful, or am I missing the point?
Maybe I can field part of this question, at least the Lyme part? As with most things Lyme, it's best to look at history. Before PTLDS was pushed, Post-Lyme Disease Syndrome was promoted. The push-back from the Lyme patient community was loud and swift, and it seems that the "compromise" was PTLDS. Problem that some people like me have with both is that both make broad assumptions. The first, PLDS, that persistent sequelae are absolutely NOT from ongoing Lyme infection. But they could not know this.
A similar problem presents with Post-Treatment Lyme Disease Syndrome in that a broad assumption is being made, i.e. that conventional IDSA/CDC recommended treatment is, if not universally appropriate, then close to that. Only, THAT isn't proven either. In fact, again, history tells us a different story, meaning - at the very least - a significant minority of patients treated will not recover. Some of the early key proponents of what eventually became the CDC-recommended treatment protocol purportedly appreciated that sad fact as far back as the early and mid '80's.
So why is it political? Because it seems to attempt to placate a few very powerful policy makers for the sake of, as far as I can see, simply placating them. It is making them happy, and perhaps more importantly, at the same time reassuring insurance companies and State agencies that might have to foot the bill for longer-term treatments by practically insinuating that CDC treatment protocol is effective enough for almost everyone.
