IDSA Comment Period Extended to, 2009 April 24

[Joe Ham]

IMHO the single biggest issue with the 2006 Guidelines is IDSAs refusal to address or even acknowledge late stage relapsing (chronic) Lyme.
The evidence for it is overwhelming and the mechanisms are well known; antigenic variation, intracellular location, L-forms (cysts), sequestration in poorly perfused locations (collagen and tendons), and most of all, the brain as niche.

Note the requirements for submission (bolded). IDSA is looking for well referenced hard science not fringe element suppositions or "testimonials" for the latest alternative fad. Many relevant and well referenced papers can be found in the Science section of this site.

This comment period is our chance to focus the new panel on the shortcomings of the previous panel and maybe get them to acknowledge the implications of the latest research which Wormser et al refused to do. It may be our last best chance.

I personally do not look for ILADS to take the initiative here. After all if IDSA does come up to speed on chronic Lyme it would obviate the need for ILADS. It is our battle and ours alone.

The new IDSA panel may actually be trying to do the right thing and it should be given the benefit of the doubt and the opportunity to do so. It should at least be made aware that we are aware of current research and expect them to address the findings and implications of that research. If we don't hold their feet to the fire now we will have no justification for complaining later.

The requirements for submission seem to indicate that the panel is trying to focus on hard science and maybe some logic deriving from that science. The comment period does not appear to be an invitation for the venting of frustration and personal stories of suffering at the hands of incompetent doctors and labs. No pathetic whining.

IDSA Lyme Disease Review Panel Extends Public Input Period and Sets the Public Hearing Date
http://www.idsociety.org/Content.aspx?id=13352


Revised 04/03/2009

IDSA has convened a review panel to examine whether the Society’s Lyme Disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence on the diagnosis and treatment of Lyme Disease.

The Review Panel initiated a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.

The public input period has been extended to April 24. Interested individuals and organizations may submit information as follows:

Submissions* must be received by 5:00 PM Eastern, April 24, 2009 and must include:

*
Statement including:


Name and contact information of the submitter

Issue(s)/concern(s) and relevance to 2006 IDSA Lyme Disease guidelines; and/or

Issue(s) not covered in the 2006 IDSA Lyme Disease guidelines


Reference list of supporting data (if available)


The Review Panel is committed to considering all points of view. The Panel respectfully requests that comments be succinct and focused into approximately 10 pages; however all written submissions, regardless of length, will be considered. Comments should identify specific recommendations from the 2006 guidelines and evidence that either supports or refutes those recommendations.

Submissions should be made to the attention of the “IDSA Lyme Disease Review Panel” at: lyme@idsociety.org.

*Note that submissions may be posted Online by IDSA for public viewing.

Open Public Hearing

The Review Panel will hold an open public hearing July 30, 2009 in Washington, DC. The hearing, which had been planned for April 27, is being postponed to allow potential presenters more time to prepare and make travel arrangements.

Individuals who wish to present at the hearing must download and submit the application and disclosure form.


Members of the public will be able to view the hearing live on the IDSA website. A taped archive will be available online after the hearing.

[Fin24]

I have two big problems or concerns
1. seems that yet another seceretive project is under way by Tincup over at LNUSA asking others' help in amassing " evidence" that MAY be sent over to the IDSA during the period theyre calling for stuff--all the sshh and very shaky capabilities of many who are involved ( despite a few who seem to be very knowledgeable and capable too) leaves me, well, cold--Ive seen nothing coming from Tin/LNUSA/etc that even smacks of professionalisms so Im skeptical-more badly presented info is NOT going to help but then again my gut feeling is that NO ONE will look at anything anyway...

2.IDSA have made up their minds, thats clear to me. It wont matter who writes or how much scientific evidence anyone gives them--theyll dutifully " collect" it and IGNORE it
--all it says is that they will collect, not that theyll USE it. and I dont think they have to--who can force them to??

I think its a lot like when academia fills an inside position. By law they have to advert it and they even have to accept applications--sometimes they even have to go thru the motions of an interview or 2--BUT in the end they can and DO fill it with a candidate theyve already known they will hire all along--its all a big playact

Since this process is so acceptable and accepted, ( to make it look like the process is fair when it isnt) and what I suspect has been happening with many so called "guidelines" and " protocols" laid out by organizations like the AMA and ANA and such, is that they make it seem as if theyll entertain all info but in reality..nope--so why wont it be as usual here?

so my 2 concerns--where is the transparency and insurance that those who are working on providing the info are qualified and providing good info that can even be used

and where is the accountability and oversight that insures that such info will indeed be read and included when the amended guidelines are written??

which is why MY ultimate assessment in all this--why bother?? IDSA has already made up their minds and is simply going thru appearances/motions

if that was ME on the committee Id not bother to read volumes of what may be questionable " facts" and sob stories---so,I cant imagine any of them doing so