Breaking News- Public Comments open on New IDSA Guidlines

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Re: Breaking News- Public Comments open on New IDSA Guidlines

Post by dlf » Fri 1 Apr 2016 17:55

There is no date shown on exactly when this was published, however we now have the summary response to the public comments period!!!

The announcement was made on the IDSA website and I noticed it just this morning.......

IDSA/AAN/ACR Lyme Disease Guideline

The Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN) and the American College of Rheumatology (ACR) are jointly developing a systematic review and clinical practice guideline on the treatment of Lyme disease.

The author composition is made up of representatives from IDSA, AAN, and ACR with representation from the American Academy of Family Physicians (AAFP), American Academy of Pediatrics - Committee on Infectious Diseases (AAP-COID), American Academy of Pediatrics - Section on Emergency Medicine (AAP-EM), American College of Physicians (ACP), Association of Medical Microbiology and Infectious Diseases - Canada (AMMI-CA), Child Neurology Society (CNS), Pediatric Infectious Diseases Society (PIDS), Entomological Society of America (ESA), and European Society of Clinical Microbiology and Infectious Diseases (ESCMID). Members representing the disciplines of cardiology, microbiology, pathology, and a methodologist with expertise in GRADE are also included. Finally, the panel includes a healthcare consumer representative, three patients with confirmed Lyme disease, and a parent of a pediatric patient with confirmed Lyme disease.

The societies are utilizing the IDSA guideline development process which includes the widely accepted GRADE methodology and are adhering to the Institute of Medicine (IOM) Standards for Developing Trustworthy Clinical Practice Guidelines. These rigorous standards are meant to assure objective, transparent, and scientifically valid systematic reviews and clinical practice guidelines.

In 2015 the guideline panel held a public comment period requesting input on its project plan that laid the ground work for new Lyme Disease Guidelines. The panel has published its response to the input received during the public comment period.

Please note the following project personnel changes:
A team at Tufts Medical will now develop the systematic review of this topic, as the medical librarians that had been working on the project were unable to sustain the volume of work related to the guideline.
Due to personal and professional reasons unrelated to the nature of this specific guideline, panel member Dr. Charles Ericsson has resigned from the panel and will not be replaced.

As a matter of course, Dr. Cameron Wolfe (IDSA Standards and Practice Guidelines Committee (SPGC) liaison to the Panel) rotated off the SPGC and has been replaced by new SPGC member Dr. Jeffrey Parsonnet.

What happens next?
After a draft of the full guideline is developed, it will be posted on the IDSA website for a 45-day public comment period. Additional information on the timing and availability of this draft will be posted to the IDSA website.

The summary response to the public comments is available from: ... 4.1.16.pdf

IDSA/AAN/ACR Panel Response to Public Comments on the IDSA/AAN/ACR Lyme Disease
Guideline Development Project Plan
April 2016

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Re: Breaking News- Public Comments open on New IDSA Guidlines

Post by ChronicLyme19 » Fri 1 Apr 2016 23:48

I'm not 100% pleased with the response. Wormser is still on the panel, but I did see some things mentioned that I didn't think they would. Hopefully it's not just fluff:

"Incorporation of the following into the PICOs:
o Evaluation of 1) psychiatric and 2) pediatric behavioral / developmental disorders as
presentations of Lyme disease.
o Consideration of 1) the diagnosis of Lyme disease in those suspected of
immunodeficiency, and 2) rationale for an immunodeficiency evaluation in patients
suspected of having Lyme disease
o Evaluation of laboratory evidence of clearance vs persistence of infection.
o Evaluation of whether the proposed biologically persistent forms of B. burgdorferi (e.g.
cysts and biofilms) require specific treatment."

At least they are recognizing these things. Step one is to admit you have a problem. It may be years yet before we see change, but at least the process of change is started with acknowledgment.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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Re: Breaking News- Public Comments open on New IDSA Guidlines

Post by duncan » Sat 2 Apr 2016 1:02

I am afraid I see nothing to indicate anything significant will change in the new guidelines (subtitled Same Ol Story?).

I expect to see a few new GIGO studies that they will toss in for purposes of reference in a bid to look relevant.

These efforts will be transparent to many, many Lyme patients, should it play out this way. It is a far more educated, connected population than 10 years ago...

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