TOUCHED BY LYME: Finally, easier way to comment on IDSA guidelines
The Infectious Diseases Society of America (IDSA) has finally lowered yet another barrier to commenting on its new Lyme treatment guidelines. Let me put this in context:
In late June, the IDSA published a draft of the guidelines on its website and went through the motions of “inviting” public comment before August 10.
But it seemed an insincere invitation at best. First of all, they “protected” the document, making it impossible to copy, download, or search for key phrases on almost 300 pages of material. Hence, you could only view it online, with no easy way to take notes.
(When Lyme patients and even Forbes magazine asked for an easier way to read the document, the IDSA said no.)
Furthermore, commenting required a burdensome online process that seemed calculated to discourage—not promote—participation. (It took LymeDisease.org’s team THREE HOURS to upload our comments on August 8, two days before the deadline.)
Then, on August 9, the IDSA seemed to have a change of heart. (Did their public relations advisers finally persuade them that coming across as mean-spirited bullies is not a good look?)
At that point, the IDSA removed the online protections from the guidelines, making the document downloadable and searchable. And they extended the deadline to September 9.
But the cumbersome process of delivering comments—especially hard on anyone with vision problems—still remained.
After some additional behind-the-scenes lobbying, it seems their public relations advisers finally convinced them that picking on people with visual impairment is also not a good look.
Now, the public is invited to email comments to email@example.com. (Gee whiz! Why didn’t anybody think of that sooner?)
Content of guidelines is hideous
With all of this brouhaha about the difficulty of reading and commenting, it’s important not to lose track of the fact that the new guidelines are a disaster. (Read my recent blog: IDSA guidelines deny Lyme diagnosis to most of the US.)
Over the past two months, Lorraine Johnson , CEO of LymeDisease.org, and Dr. Betty Maloney, of the International Lyme and Associated Diseases Society (ILADS), have analyzed the IDSA guidelines and prepared a 58-page rebuttal. They submitted this before the original deadline.
More than 40 (Update: 64) patient advocacy groups have endorsed these comments, including the national Lyme Disease Association, the Bay Area Lyme Foundation, and the Canadian Lyme Disease Foundation. Together, the groups have formed the “Ad Hoc Patient and Physician Coalition.”
Read our rebuttal: Ad Hoc Patient-Physician Coalition Comments
See the Lyme patient organizations that have signed on to these comments. 64 endorsing groups from 5 countries
If your Lyme advocacy/support group would like to be listed as an endorser of our comments, please send an email to me, firstname.lastname@example.org, with contact information for your group.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of “When Your Child Has Lyme Disease: A Parent’s Survival Guide.” Contact her at email@example.com.