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.
dlf
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Breaking News- Public Comments open on New IDSA Guidlines

Post by dlf » Tue 10 Mar 2015 15:46

The time allotted for public comments is limited and closes April 9 - It is time to write your comments and submit them and let everyone you know, who will want to make comments, (especially anyone with medical/scientific background) that this needs to be submitted ASAP


http://www.idsociety.org/templates/cont ... 2212267305#

Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan
Comment Period Closes April 9



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 guideline on 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). We also have members representing the disciplines of cardiology, microbiology and pathology, a consumer representative and a methodologist with expertise in GRADE.

The societies are utilizing the IDSA guideline development process, which includes a conflict of interest review of the guideline’s authors. In addition, the societies will make every effort to develop the guideline in accordance with the Standards for Developing Trustworthy Clinical Practice Guidelines developed by the Institute of Medicine (IOM). As part of the final document, the societies will complete a self-assessment checklist reviewing adherence to the IOM Standards.

At this time, IDSA, AAN and ACR request your input on a project plan that lays the ground work for new Lyme Disease Guidelines.

The 30-day open Public Comment period on the Lyme Disease Guideline Project Plan is from March 9 to April 9. It will be available on the IDSA Website between these two dates. During the Public Comment period, anyone may comment on any aspect of the Plan, including the methodology and development process utilized as well as adherence to the IOM standards. All comments must be submitted through this link. Please note that you will need to submit your comments in one sitting. Therefore, you may wish to review the Plan and place your comments in a Word document and when you're ready, copy and paste them into the comment field in the survey.

The full Project Plan and link to the data collection mechanism can be found below.
Note: When submitting comments, do not include medical information about yourself or another person.
Project Plan
Comment Form

After the Public Comment Period is closed, what happens next?
The guideline development panel will consider all comments received through the online data collection mechanism, within the dates of the Public Comment period.
A summary response from the Panel to the comments received will be posted on the IDSA website following the close of the Comment Period.
After a draft of the full guideline is developed, it will also be posted on the IDSA website for a 30-day public comment period. Additional information on the timing and availability of this draft will be posted to the IDSA website later this year.
- See more at: http://www.idsociety.org/templates/cont ... lMU4G.dpuf

duncan
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by duncan » Tue 10 Mar 2015 16:30

That's quite a list of authors.

I know I sure feel better entrusting my disease to these people. :D

You should try reading the list of names aloud. I did.

As I did, I noticed a sort of ominous rhythm emerge from the utterance of the names, not quite natural, like a hushed and unholy summoning...My hands grew clammy and were clenched with fear...Outside, dark clouds began to gather, and frigid winds blew hard and buffered my house, as wild dogs howled in the distance, and the room grew silent and black...I had stirred something primal and ancient, deep and slumbering, something that should not have been awakened...And I threw away the list as the terror gripped me and I fell into despair.

dlf
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by dlf » Tue 10 Mar 2015 16:49

I know that feeling.

However, I was thinking not so much Steven King, but something along the lines of a "Kangaroo Court", or perhaps the Inquisition with a twist of Monte Python thrown in.

Yes, send comments, but expect them to be politely (or not so politely) ignored.

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ChronicLyme19
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by ChronicLyme19 » Tue 10 Mar 2015 17:03

So as in we can comment?

I think I might try and put together some evidence/excerpts from research on immune dysfunction in late stage/persistent lyme. Excerpts from the Hastey and company work at UC Davis or the article from the Australian doc.

The current guidelines hurt those of us who have underlying immune deficiencies, like IgG deficiencies or those who have been formally diagnosed with CVID. We get stuck with other persistent infections that need longer than average antibiotic use, so why would Lyme be an exception? I think I might try to look up persistent Treponema pallidum in CVID patients to try and make an analogy to show that gray areas do exist.

I'd also like to point out flaws in current research, where subpopulations of people have not been studied. Things like most studies were done on patients with competent immune systems that tested two tier positive, what about the cohort of patients with CVID or multiple infections that have suppressed the immune system? Or what about patients that also have cancer or diabetes or some other serious underlying medical condition? The guidelines need to be flexible enough to cover these complex areas.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by duncan » Tue 10 Mar 2015 18:00

I will be commenting. Please note that, if I read this correctly, it appears we only get one chance. So I will be drafting my comments parallel to their outline or TOC, and my one submission hopefully will be comprehensive.

Not that they will pay it any mind. ;)

phyfe
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by phyfe » Tue 10 Mar 2015 18:32

duncan wrote:That's quite a list of authors.

I know I sure feel better entrusting my disease to these people. :D

You should try reading the list of names aloud. I did.

As I did, I noticed a sort of ominous rhythm emerge from the utterance of the names, not quite natural, like a hushed and unholy summoning...My hands grew clammy and were clenched with fear...Outside, dark clouds began to gather, and frigid winds blew hard and buffered my house, as wild dogs howled in the distance, and the room grew silent and black...I had stirred something primal and ancient, deep and slumbering, something that should not have been awakened...And I threw away the list as the terror gripped me and I fell into despair.
HA!!! Duncan, you are so funny...I laughed until I cried. It's so nice you are able to add levity to this oh so serious topic. :woohoo: I for one really appreciate you!

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ChronicLyme19
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Location: NY, USA

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

Post by ChronicLyme19 » Tue 10 Mar 2015 22:39

duncan wrote:Not that they will pay it any mind. ;)
I'm a bit afraid of this as well. There's so much evidence out there, why would they suddenly start listening to it now when they have ignored it for so long? How do we know this is not just for show?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

dlf
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Joined: Sun 7 Apr 2013 15:36

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

Post by dlf » Wed 11 Mar 2015 2:54

ChronicLyme19 wrote:
I'm a bit afraid of this as well. There's so much evidence out there, why would they suddenly start listening to it now when they have ignored it for so long? How do we know this is not just for show?
We don't know, however if we don't try, we won't get heard at all. It won't be a wasted exercise, even if they don't listen, you can say that you did try! Your idea for a submission is excellent and it might be useful for another purpose, even if they don't take the information you will be providing to heart. I think it is important that people do submit their comments, if only to say, yes we are out here and we care about what you are doing. This time we need them to get it right, so that patients will have options. It is also important that they know that the world is watching what they do and how they do it. There can be strength in numbers.This is not the time for apathy!

Lorima
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by Lorima » Wed 11 Mar 2015 2:56

Duncan,
:D
Brilliant!
"I have to understand the world, you see."
Richard Feynman

duncan
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Re: Breaking News- Public Comments open on New IDSA Guidline

Post by duncan » Wed 11 Mar 2015 10:06

It's not just the panel members we may be influencing - I doubt they will pay us much attention, but who knows? Maybe these comments will be available to the public as well, and others might be swayed or encouraged by what we have to say.

And if we can actually swing one or two of the panel members our way, then certainly it will have been worth it. If we can't, I think it is a good thing just to have put the truth out there, to have tried, regardless.

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