Last week, I contacted the IDSA’s media spokesperson for a reaction to the deluge of postings on the organization’s Facebook page. Here’s her response.

Last week, the Infectious Diseases Society of America posted the following question on its Facebook page. “What would you like to see from your society in the coming year?” The query was apparently intended for its own membership. However, the Facebook page is open to any one, and Lyme patients soon jumped on what they saw as an opportunity to send the IDSA a collective message. 

The IDSA Facebook page has been in existence for a little more than a year. During that time, their Facebook handler would periodically post articles or comments related to different infectious diseases, and there would be a few “likes” and the occasional comment posted by the public. That changed dramatically January 4, after the first Lyme comments were posted.

As word spread throughout Facebook, Lyme patients from all over the world started posting comments and encouraging others to do the same. The gist of most messages was a protest against the IDSA Lyme guidelines. The IDSA didn’t shut down the page (which many observers thought they would do). However, they were obviously watching the process closely, since anything deemed “abusive” was deleted immediately. Even with many comments deleted, as I write this, there are more than 1900 Lyme messages posted on the page.

On Friday, I contacted the IDSA for a response, and received the following email:

Thanks for reaching out to IDSA for comments on the recent Facebook comment campaign about Lyme disease in response to the question “What would you like to see from your society in the coming year?”  IDSA is an active, member-driven society and as such, this question was intended for the 9,000 or so IDSA member physicians, researchers and healthcare providers who are concerned about the full range of infectious diseases including drug-resistant infections, influenza, hepatitis, HIV/AIDS, tuberculosis and other life-threatening diseases.

IDSA absolutely remains committed to providing the best treatment possible for all patients, including those diagnosed with Lyme disease. It is in the best interests of patients that we rely on scientifically valid medical evidence to inform our treatment guidelines. As recently confirmed by an independent panel of medical experts, our Lyme disease guidelines represent the best advice that medicine currently has to offer. IDSA’s most recent clinical practice guidelines on Lyme disease remain current. All of our guidelines, including that for Lyme disease, are reviewed on a regular basis to determine the need for updating based on any newly available (and scientifically rigorous) evidence that would warrant a change. The IDSA website will indicate when the guideline is being revised or updated, along with an estimated timeline for completion.

Despite accusations by some to the contrary, it is simply untrue that the panel members who worked on our Lyme disease guidelines had conflicts of interest. All were completely transparent and none of them stood to gain from recommendations in the guidelines. In fact, they would have benefited more from recommending long-term (and expensive) antibiotic treatment.

For more than a decade, IDSA has listened to input from physician and patient advocates from the chronic Lyme community. The Society has participated in discussion panels in scientific and community settings, welcomed presentations at our scientific meetings, responded to hundreds of calls and letters, given hundreds of media interviews and successfully resolved a legal challenge to our practice guidelines, which resulted in the decision by a special review panel that the IDSA guidelines are medically and scientifically valid.

The answer, therefore, to whether or not the IDSA will pay attention to the comments on our Facebook page – and the feelings of patients in general – is clearly yes. Providing guidance for good patient care has always been and will continue to be a cornerstone of our Society’s mission. Relying on science and medical evidence is the best and safest way to achieve that.

Thank you,

Diana Olson

Vice President, Communications

Infectious Diseases Society of America

Once it became clear that the IDSA was deleting some of the Facebook comments, a group of Lyme patients started another Facebook page, called “IDSA Question–All Comments.” On this page, they copied over comments as they were posted on the IDSA page, managing to save most of the one’s the IDSA deleted. (Though I understand that a few of them got away before they could be captured.)

Read the IDSA Facebook page here.

Among other things, I disagree with the following statement by Ms. Olson: “As recently confirmed by an independent panel of medical experts, our Lyme disease guidelines represent the best advice that medicine currently has to offer.” I don’t believe that a panel made up of IDSA members (and chosen by the IDSA) can be considered “independent” of the IDSA. And I don’t believe that a guidelines development process that systematically excludes divergent points of view can be said to represent the “best advice medicine currently has to offer.”

I repeat the suggestion I wrote in my last blog on this topic: How about a revise of the IDSA Lyme guidelines, in an open process that allows all stakeholders a place in the discussion? 

Read my previous blog post here.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.