I've very much wanted to take advantage of my FREE flight benefits (through my husband's summer-second-job) and head down to participate in this coming Saturday's protest rallies outside of IDSA's conference in San Francisco (more below).
But work was supposed to be too busy this week, with meetings up through late Friday afternoon. So it was just not looking feasible.
But the government has shut down, and I am a federal employee. My Lyme Literate Doctor (LLMD) is in Seattle, I am due for an appointment, and my insurance covers in-office visits now, but not phone visits.
So I've scheduled an appointment for Friday.
Which puts me closer to San Francisco by Friday.
If I am in Seattle on Friday, and can fly for free....
My amazing husband, who worked a second job all summer to earn the free flights but has not gotten to fly anywhere since the beginning of summer and has just started time off, is completely supportive of this attempt. This means lots more juggling of house work plus major house projects than usual, plus kid shuttling all week and weekend....which he already does most of anyway while I try to work as close to full time as I can, because he is amazing. I can say this because he doesn't really read my blogs (and I don't really mention when I write them) and he's not into social media.
So, day 1 of government shutdown/furlough, and four days until maybe attending the San Francisco IDSA Protest.
More to come, but THIS ARTICLE at LimeDisease.org (excerpt below), describes the motivations for this rally very effectively.
EXAMPLES OF HOW THE IDSA GUIDELINES MISREPRESENT OR IGNORE SCIENCE:
- They state that only "a few" patients remain ill after standard treatment while the true figure is 25 to 50 percent. (Stricker & Johnson 2011)
- They say the NIH-funded trials prove definitively that longer treatments are not effective DESPITE THE FACT that only four such human studies have been conducted, DESPITE THE FACT that two of the studies showed improvement on treatment, and DESPITE THE FACT that the sample populations in each of the treatment trials was small and did not reflect patients seen in clinical practice. (Delong et al. 2012, Fallon et al. 2012) Fallon's evaluation of the four trials concludes that "approximately 60% of patients with persistent post-treatment Lyme fatigue may experience meaningful but partial clinical improvement in fatigue with antibiotic retreatment."
- Two recent studies by members of the IDSA have found that the majority of the recommendations in the IDSA guidelines are based more on "expert opinion" than on scientific evidence. (Khan et al. 2010; Lee et al. 2011; Johnson & Stricker 2010a). Forty percent of the studies cited are written by the authors of the guidelines, who ignore other studies that don't support their viewpoint. (Johnson & Stricker 2010a).