What do you think about the IDSA response to all the comments on their facebook wall? Do you think they are going to take these comments seriously, or just continue to sweep Lyme under the rug like I read someone say in one of the comments.
Here is what they said on their facebook wall:
IDSA appreciates all of the passionate responses. Although we aren’t able to respond personally to each comment, we want to assure you that we take note of the input. IDSA’s member-physicians are concerned about the full range of infectious diseases, including HIV/AIDS, drug-resistant infections, influenza, tuberculosis and many others, in addition to Lyme disease. Providing guidance for excellent patient care is our goal, and relying on science and medical evidence is the best and safest way to achieve that.
Read the IDSA response to Dorothy Kupcha Leland, LymeDisease.org’s VP here:
What I don’t understand is they say. “IDSA’s most recent clinical practice guidelines on Lyme disease remain current.” Well where is this current research that says Lyme is cured in three weeks of doxy?
Then they say, “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,” what evidence are they looking at? There is research, some done by their own panelists that show lyme is chronic. Look here for some of this research. http://whatislyme.com/research-links/ Why won’t they recognize this research? What research are they going off of? Just from googling Lyme Research I can find dozens of articles pointing in the direction of Lyme being persistant, but I am yet to find one that said it was cured in three weeks.
And the IDSA says: “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.”
But if they don’t have any ties or connections to insurance, pharmaceutical, or any things else that would be a conflict of interest, then why would they benefit from prescribing long term antibiotics? Was that a slip out IDSA?
After the IDSA started deleting a bunch of comments that Lyme patients were posting, a Facebook group was started called
The IDSA question – all comments
There was a team of people trying to collect each comment as it was posted but it was impossible to completely catch up. If you had one of your comments deleted please post it on the groups wall. We are trying to keep all comments in one place on Facebook.
Some people were also blocked from the IDSA Facebook wall. If you were blocked can you please comment on the group wall also so we can keep track of what they were deleting and who they were deleting. Thank you!