IDSA responds to Lyme patient comments–sort of
About this time a year ago, LymeDisease.org joined with some 90 other Lyme patient advocacy organizations in giving wide-ranging comments to the Infectious Diseases Society of America regarding the proposed update of the IDSA’s Lyme treatment guidelines.
Today, the IDSA issued its response. It will take a while for us to sift through the organization’s remarks compared to our long list of questions. But right off the bat, the IDSA has failed to remove Dr. Gary Wormser, whom we see as having many conflicts of interest. (We’ll detail those in another blog soon.)
And the organization added Dr. Jeffrey Parsonet to the panel. He was an author of the last version of the IDSA Lyme guidelines, and in our view, has conflicts of interest.
In response to the question of conflicts of interest, the IDSA says:
The four guideline co-chairs do not have relationships that constitute conflicts of interest, and the majority of the remainder of the panel have no relevant conflicts of interest.
You’ll recall that another complaint we had about the IDSA’s review panel was that the “patient representative” did not have Lyme herself and admitted to having no knowledge of or experience with Lyme disease. The IDSA has apparently re-thought that decision, and says they have now chosen three patients with “confirmed” Lyme disease and the parent of a child with confirmed Lyme disease. However, they have not as yet announced who these people are, so we have no way of knowing whether or not any of them have standing within the Lyme patient community as a whole. (The Institute of Medicine’s recommendations for guidelines panels includes at least one representative of the advocacy community.)
Here’s are two links to information on the IDSA website: initial statement and longer comments. Stay tuned for more analysis from us.
- April 1, 2016 at 4:07 pm
IDSA KNOWS they cannot win on science! They themselves (IDSA panel members) have made it very clear in numerous communications which occurred after the writing of the guidelines in 2006. (By the way, these guidelines have not been revised since then, therefore one must assume that they are spending more time on the socio-political realm than in the science realm).
But they win if they are able to pull us into the “socio political” battle .
As advocates, we need to focus on true science– and redirect the media back to the truth. This requires advocates to not twist science in our favor or spread our assumptions of our beliefs when there is no clear scientific backing. When we do that, we no different that the IDSA side, and I believe this–in part has hurt ability to forge change.
IDSA quit doing the science in 2006 when they realized they could “not win on the science” and focused their energy on developing a strong socio-political platform and developed allies who could support that, while ILADS has continued to move forward in science and understanding of this disabling disease.
Lets work diligently together to promote the sound, well supported science that ILADS has worked hard to collaborate on.
Maybe we can set the “muddy” science issues aside so we can come out unified and clear in our mission.
There is so much to agree on, and the other side is sure to divide us if we engage in the socio political nature of the attacks. Later, as science clearly proves things, we can add those to the arsenal of truth.
- April 1, 2016 at 9:26 pm
So their response was an emphatic double middle finger?
- April 1, 2016 at 9:27 pm
Hmm. Maybe this is IDSA’s version of an April Fool’s joke? Problem is, they don’t get their own punchlines.
- April 2, 2016 at 8:00 am
No RELEVANT conflicts of interest? That means there ARE conflicts of interest and they themselves just don’t think they’re relevant. Well, WE DO. I work for a government entity. ANY conflict of interest should cause the participant(s) to recuse themselves. It seems wrong. Heck, it screams wrong.
- April 2, 2016 at 8:28 am
IDSA is a prime example of corruption.
- April 2, 2016 at 11:36 am
IDSA are not scientists, they are simply another social organization with fee membership and “guidelines” that are suggested by their membership. If you read their link, http://theidsa.org/membership/ you’ll see they denote they are a “club”. Once you understand who you’re dealing with, you’ll quickly acquiesce any power you “believe” they hold over you. They are a nothing in science and only a social club.
Since the membership of this “social” organization – IDSA – include persons such as Gary Wormser, (who has won an average of 40% patient ratings on nearly every doctor rating website by the way) I don’t believe most people hold IDSA’s opinions of any high regard.
Quite the contrary, it’s pretty obvious their stance is revealed by their publications as negligible, at best. If the majority of the IDSA membership consider these multi-systemic, infuriatingly intense multi-vector infection conditions of tick-borne diseases as trifling or insignificant, it becomes transparent they are unable to “think outside the box” and rather prefer to ride the patient treatment scene as a horse with blinders – both narrow-minded and ineffectual, if anything.
I’ve not followed their suggested “guidelines” since 1998 because they are not law, they are simply “guidelines” of some social group, if you keep that in mind. A quality healthcare provider would never limit their dx and tx to one “social membership organization’s opinions”, unless they wanted to commit healthcare suicide – especially this particular membership of questionable, unsavory types.
The fact that any government department would rely on a contentious, self-limiting treatment group such as IDSA is ludicrous. The group may have political pull, but times are quickly changing.
- April 3, 2016 at 6:37 am
I think those on that panel should be in our shoes for a few months at least so they can experience for themselves the pain,anxiety,fatigue and all the other Bs most of us with chronic disease suffer from each and every day.
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