Please sign the white house lyme petition

[samjones1122]

There is a Lyme petition at the following address:

https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.

This is the best chance for raising Lyme awareness I have seen, so please spread the word!

[Ricobord]

In Jackie's defense, she is a very knowlegeable voice on Lyme Disease and coinfections and has been of immeasurable help to innumerable people here on this forum for years.

I personally signed the petition, not because I believe the White House can make the IDSA do anything, but because the CDC and NIH are accountable to the White House.  Without the support of the CDC and NIH, the IDSA guidelines would be irrelevant.

The sad reality is that the IDSA is accountable to no one, and yet is accepted  as the repository of knowledge and voice of authority on all things related to Infectious Disease.  In reality, their Lyme Disease Committee functions more like a cabal of people who are willing to ignore evidence that conflicts with their previously stated opinions in order to protect their reputations and preserve their power. They have mistaken their own opinions for facts, and eagerly persecute those who challenge them.

And so, Jackie is right. The government cannot change the IDSA guidelines. But they can stop endorsing them and supporting the guidelines authors with taxpayer funded grants.  I expect that the government can also make the CDC change its terribly inadequate testing recommendations that result in so many undiagnosed cases.

This is a patient-to-patient forum, so I encourage you to inquire rather than accuse. While many of us struggle with anger over the situation (I certainly do!), we strive to keep this forum as a place of respectful discussion and encouragement.

[JackieCalifornia]

Correction:  IDSA is a 501(c)(6) entity, not 501(c)(3).  Contributions are apparently not tax-deductible as a result.

[JackieCalifornia]

If you read my comments more carefully, you will see that my entire point was that writing to Obama will not magically cause the IDSA to do anything.

The IDSA is not part of the Federal government.  IDSA is a 501(c)(3) nonprofit organization.  Repeat:  NOT part of the Federal government.

There have been several posters here with the same general message that writing to Obama will cause the IDSA guidelines to change.  It is good that people are interested, but if people want to put their energy into changing the current Lyme situation, then it makes sense for them to spend that energy in a more effective way.

Someone else noted more helpfully that the regulatory arms of the Federal government rely heavily on the treatment standards established by non-governmental groups like IDSA, and so changing the IDSA guidelines may have a good effect (indirectly) on modernizing treatment options for those with Lyme etc.  

That's a fair point, but Obama himself cannot change the IDSA guidelines, so writing to him will not magically change the guidelines.

[nurseanj]

Their outdated guidelines are the reason patients are not being treated properly. Clearly you never bothered to read the petition!

[nurseanj]

Insurance companies are hiding behind IDSA guidelines as supported by the CDC, this is a FACT period no discussion necessary. The IDSA guidelines have everything to do with current Lyme disease treatments. Wiki entries can be written by anyone, perhaps you need more research to be a real voice in this discussion!

[nurseanj]

Insurance companies are hiding behind IDSA guidelines as supported by the CDC, this is a FACT period no discussion necessary. The IDSA guidelines have everything to do with current Lyme disease treatments. Wiki entries can be written by anyone, perhaps you need more research to be a real voice in this discussion!

[JackieCalifornia]

The IDSA is *not* a government agency.  It is a private association and as such is entitled to its own views, however much we might disagree with them.  

Writing to the Federal government will not change IDSA policies, but you are of course entitled to do so.

From wiki (and recall that the wiki entry is written by IDSA):  

"The Infectious Diseases Society of America (IDSA) is a medical association representing physicians, scientists and other health care professionals who specialize in infectious diseases. It was founded in 1963 and is based in Arlington, Virginia. As of 2012, IDSA had more than 9,000 members from across the United States and nearly 100 other countries on six different continents.[1] IDSA’s purpose is to improve the health of individuals, communities, and society by promoting excellence in patient care, education, research, public health, and prevention relating to infectious diseases."