TOUCHED BY LYME: IDSA gives its response to flood of Facebook postings
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.
Thank you for your continuing advocacy on behalf of Lyme sufferers who have not had the medical treatment and respect they should. Guidelines which result in misdiagnosis or no diagnosis, as well as incomplete treatment should be revised and re-publicized throughout so that the doctors in the South (and other places) do not just go by the old lines that they have learned previously and dismiss patients to suffer unduly.
Great article, how do they believe that Wermser and CO. would benefit from long term antibiotics? That's one of the dumbest things I've heard from them!
if you want to use the best science available for lyme disease try to learn the science from the international lyme disease board. they seem to be more advanced and have better cure rates. learn what they know, don't just spin it to suit your program.
DOGS, LIVESTOCK, even CHICKENS get better prophylactic antibiotic treatment for tick borne bacterial/parasitic illnesses – in prevention of neurological, crippling and debilitating pain and (mental and physical suffering), disability, even death, than HUMANS!!!
(IDSA) is "IN-HUMAN" for Profit and other!!!
The only thing we can do is to hammer away and keep the fight going, even if it is for the next generation.
I believe more than Lyme is on the line here, for many other diseases which they are ignoring probably have an infectious cause.
They say that long term antibiotic treatment is expensive! What about the people that have to go on disability because they don't know they have lyme because of years of negative testing. They can't work due to the fatigue and pain they are in! What about missed days of work and all the doctors appts! Lowered immune system etc. What about the cost to us, to the individuals, who loose every day because they can't get the proper diagnosis's!