LYMEPOLICYWONK: 67 Groups Submit IDSA Lyme Guidelines Process Comments
LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 patient groups across the nation. LymeDisease.org also launched a patient survey on March 28 to solicit patient views. It drew more than 5,500 responses. We included findings from the survey in the formal comments we filed with the IDSA.
On March 9, 2015, the Infectious Diseases Society of America announced that it will update its Lyme disease guidelines. The IDSA provided a 30-day window for the public to comment on its guideline development process. This period closed on April 9.
The comments highlighted a number of flaws in the process, including failure to conform with the Institute of Medicine standards on creating trustworthy guidelines. The IOM standards require that the panel includes populations expected to be affected by the guidelines. However, this panel does not include any Lyme patients, any physicians who treat them, or even the full spectrum of views held by researchers.
In addition, although the guidelines are sponsored by three seemingly independent organizations (the IDSA, the American College of Rheumatology, and the American Academy of Neurology), the fact is that all of these organizations had members who were investigated by the Connecticut Attorney General for antitrust violations in connection with the IDSA 2006 Lyme guidelines.
- The IDSA/AAN/ACR panels should be balanced and represent scientists and physicians from both opposing Lyme paradigms.
- Robust patient representation (2 or more) is important and should not be token. Patients should be empowered and prepared patients who represent the population affected by Lyme disease.
- Consensus should not be obtained by excluding people who disagree.
- Controversies and disagreement should be acknowledged. Minority viewpoints should be published with the guidelines.
- A public docket of all comments should be maintained and be publicly posted on the IDSA website.
- The IDSA/AAN/ACR guidelines should be reconciled with the guidelines of ILADS.
- All value judgments by the panel, particularly those pertaining to the patient’s role in risk/benefit assessment, should be carefully delineated together with the basis for such judgment.
- Guidelines should undergo rigorous external peer review by all interested parties. Responses to comments should be made public.
- April 10, 2015 at 11:50 am
Well, well….wow…. somethings seem to be making a turn around. It only took over 2 decades of corruption and many to suffer and die. Moving past that I guess….. as I suffer and wonder when death will come… The IDSA will actually try and move forward and get the Guidlines to be trustworthy? Wow, alot that is listed in the way for that to be done….sounds just like what Chris Gibson Congressman of NY was trying to do! Only to be shot down by CDC with some dumb Grapefruit Oil idea…that people put on and it will save the day! Whatever.
If any of this is true and it will happen, I’m all for it….but I will for sure have a “wait till I actually see it” attitude. That is only due to fault of IDSA trying to do the right thing on FaceBook and then after Thousands of us tell the truth like it is….to get shot down and removed, not to mention what was done to us at last years Pil PA gathering we had… We where not only mistreated before all that with the booth and telling us no, but the crap pulled during and after the awareness gathering. IDSA, CDC, NIH and many many others have ALOT to make up for! I can forgive…I can move on…but don’t disrespect me or all the others who’ve suffered….and don’t dare forget all the new Victims getting INFECTED each day forward…get every part of it right and truthful!
- April 14, 2015 at 12:28 am
Bravo! And thanks to everyone involved with this submission. Keep up the SUPERB work! Your efforts are greatly appreciated.
There’s no transparency with IDSA now. Just getting all the public comments published on the IDSA website would be a big step in the right direction.
- August 21, 2015 at 7:46 pm
so much comment, somlittlevresource!
- January 27, 2017 at 1:26 pm
How soon can we see changes in Covered Services by insurance companies?
- January 27, 2017 at 1:28 pm
BTW, I am overjoyed!!!!! Thank you Senator Blumenthal, thank you Scientists, thank you advocates and thank you Lyme Warriors!!!
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