Hours before its self-imposed deadline of August 10, the Infectious Diseases Society has given a brief reprieve to frustrated patients trying to comment on the IDSA Lyme guidelines.

The new deadline is September 9.

Here’s some background on what transpired:

In June, the IDSA released a draft of its new Lyme treatment comments and supposedly invited the patient community to comment by August 10.

I say “supposedly,” because the organization devised a complicated procedure for reading and commenting that seemed designed to discourage people from even trying.

It was like requiring potential commenters to keep one hand tied behind their back while wearing a blindfold.

As Dr. Judy Stone, writing for Forbes.com, noted recently:

The IDSA has made review more difficult by only offering the draft online. It is “protected,” so one cannot even cut and paste lines into a reply or commentary, nor highlight passages for review. Nor can one search the document by keyword. Forbes and I have asked for a pdf that can be annotated, to make review and comment easier, and they have refused. Their refusal makes me feel they really don’t want people to comment on their 81-page draft and 203 page supplement.

And that’s only to READ the document. Submitting comments also requires an onerous process.

At the last minute, on August 7, volunteer Lyme activist Lucy Barnes expressed her frustrations in an email to the IDSA, the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR). (The three organizations sponsoring the guidelines.)

She called the “daunting task” of reading and commenting “unfair to all interested parties, especially the disabled.”

She also said:

Many patients across the country simply cannot participate in this process and complete the project on time due to the severity of their tick-borne disease related illnesses, their resulting disabilities and/or the effort and energy involved.

It places an undue burden on them, essentially silencing countless voices across the country and even worldwide…. [When copying comments into the IDSA’s required Survey Monkey form] the formatting becomes so jumbled (paragraphs pushed together, no center for titles, spacing problems, etc.) that it would take hours to try to correct it once inserted into the form and even then I am still not sure it will be readable.

My vision is too poor to be able to do this additional work in the tiny space allotted on the form in the small font that automatically appears, and my energy levels are already strained attempting to complete my project on time; therefore, I am not able to use the only option you’ve provided to submit comments.

Lo and behold, on August 9, the IDSA extended the cutoff date for comments–and decided to eliminate the “protections” on the document. An email to Barnes stated:

The deadline to submit comments is now Sept. 9, 2019.

In addition to the deadline extension, the format of the draft guidelines posted on the public comment website has been changed to allow readers to search, download and print the document, ensuring that anyone interested in submitting comments is able to access the draft guidelines and have appropriate time to review and comment.

So, there you go. After weeks of stonewalling anyone who complained about the process, finally the IDSA has agreed to lessen the burden a bit. However, the problematic commenting procedure remains unchanged.  (Update: the IDSA has also simplified the comment process. If you choose, you can instead just send your remarks in an email.)

LymeDisease.org and a coalition of partner organizations did submit comments yesterday, a day before the original deadline. Our response totaled 58 pages—and was composed by Lorraine Johnson, CEO of LymeDisease.org, and Dr. Betty Maloney, of the International Lyme and Associated Diseases Society (ILADS).

These comments have been endorsed by more than 30 patient advocacy groups, including the national Lyme Disease Association and the Bay Area Lyme Foundation. (August 26 update: 58 groups have signed on.) Together, the groups 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. 58 groups endorsing IDSA comments

Read, download, and comment on the IDSA Lyme guidelines.

If your Lyme advocacy/support group would like to be listed as an endorser of our comments, please send an email to me, dleland@lymedisease.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 dleland@lymedisease.org.