TOUCHED BY LYME: IDSA learns what it means to “go viral” on Facebook

On January 4, a handful of Lyme patients in different parts of the world happened to read the following question posted on the Facebook page of the Infectious Diseases Society of America: What would you like to see from your society in the coming year?

The first to reply was Todd Meese of the United States, who wrote, “How about a cure for Lyme disease?”

Second was Joanne Drayson, a Lyme patient/advocate from the UK, who chimed in with, “An honest review of the Lyme Disease Guidelines looking at the science presented at the IOM workshop and acknowledging that all is not known about this emerging complex disease with its many co infections.”

Jaisibel Sullivan of Kansas said “Some honesty and understanding about Lyme would be at the top of that list.”

Then, it was off to the races. These comments from Lyme patients showed up in the Facebook news feeds of their friends, those friends made their own comments, and well…that’s how Facebook works.

When I went to bed last night, there were almost 300 comments from Lyme patients on the IDSA page. When I woke up this morning there were over 400. More than 500 as I write this now.

Most of the postings refer to the IDSA’s Lyme treatment guidelines, and the negative effect those guidelines have on Lyme patients. The comments I’ve read have generally been respectful in tone. Apparently, some were not and have been removed.

The person running the IDSA Facebook page alluded to that, making the following post: “IDSA wants to encourage open dialog, however, please note that personal attacks against the society or its doctors, foul language, and other abuse will not be tolerated on our Facebook wall. IDSA takes Lyme disease very seriously, for more information visit: http://www.idsociety.org“

I also don’t condone “personal attacks against the IDSA or its doctors, foul language and other abuse.” Yet I understand the deep well of resentment that can give rise to them. The IDSA may claim that it “takes Lyme very seriously,” but the patient experience is very different.

Patients are routinely denied appropriate medical care for their serious illness because their IDSA-influenced doctors and insurance providers follow the IDSA Lyme treatment guidelines. Lives and families are destroyed based on the IDSA guidelines.

The media specialist who’s running the Facebook page may say that the IDSA “wants to encourage open dialog,” but if true, that must be a brand new policy. Up until now, IDSA has done everything possible to exclude patient voices, input from doctors who treat chronic Lyme, and information from legitimate Lyme researchers who have discovered information about Lyme that the IDSA finds inconvenient.

Recent articles from some of the IDSA’s top Lyme guys even call Lyme patient advocates a “threat to public health.” (Gee, IDSA, is that an abusive statement about me?)

Last year, the Institute of Medicine said it was essential for medical guidelines to take patient viewpoints into account. Up until now, the IDSA has never done that.

So, here’s your chance, IDSA. Patients are coming to your Facebook page and sharing views that you invited them to post. Most of them are keeping their language clean. Will you pay any attention at all to what they say? Will you listen for the pain behind their words?

How about a revise of the IDSA guidelines, in an open process that allows all stakeholders a place in the discussion?

I’m willing to hope the New Year will bring some softening to your anti-Lyme patient stance.

But I’m not holding my breath.

Click here to comment on the IDSA’s Facebook page.(Must be a member of Facebook to do that.)

 

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