Jenna’s Lyme Blog

For most of us, medical care has been taken for granted, and the authority of licensed medical practitioners unquestioned.

When you or I go to our family doctor who correctly suspects some type of infection, the medical protocol is for the licensed doctor to consult the accepted procedures as outlined in the enormous IDSA’s (Infectious Disease Society of America), and then follow the protocol with confidence.

Unfortunately for those of us with chronic Lyme disease; all of our symptoms, the intense unbearable pain and the clear evidence of disease – the IDSA does not acknowledge the existence of chronic Lyme disease. The IDSA guidelines are clearly no longer appropriate for handling Lyme disease due to the mounting evidence of the morphic and antibiotic-resistant disease.  Well, it took the medical community a long time to figure out Lyme’s cousin, syphilis, too.

So after mounting political pressure in Connecticut, the Attorney General, as most of you are aware, required the guidelines to be re-written due to obvious conflict of interest amongst the ruling committee.

A quote from the Attorney General Blumenfeld:

“The IDSA’s Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines — in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman — expert in medical ethics and conflicts of interest, selected by both the IDSA and my office — will assess the new panel for conflicts of interests and ensure its integrity.”

Blumenthal’s findings include the following:

• The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
• Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
• The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
• The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
• The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
• The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

IDSA has reached an agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel — comprised of individuals without conflicts of interest — will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.

However, the deadline for these revisions has already passed, and insiders are warning not to expect any major changes.  We all want to hope, but there is little reason for hope in the face of reality.

As Voltaire once said,

“Doctors are men who prescribe medicines of which they know little,

to cure diseases of which they know less,

in human beings of whom they know nothing.”

Similar Posts:

• IDSA Lyme Treatment Guidelines: Politics As Usual
• ABC Reports on Misdiagnosis Regarding Lyme Disease
• IDSA Creates Black Thursday For Those Suffering With Chronic Lyme Disease
• Letter Regarding Appointment of Committee to Review IDSA Lyme Treatment Guidelines
• How Normally Rational People May Become Enraged Over Chronic Lyme Disease Debate
• Help for Chronic Lyme Disease Victims in Connecticut – Will It Stimulate Other States?
• How Many People Have Chronic Lyme Disease?
• Myth Of The Bulls Eye Rash
• New Treatment for Lingering Neuropathic Pain
• Major Newspaper Reports On Chronic Lyme Disease.

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Posted on January 15th, 2010 under Chronic Lyme Disease, Discussion, Lyme News, Research and Development • Tags: Chronic Lyme disease, IDSA, IDSA Treatment Guidelines, Treatment for Lyme Disease. •  Email This Post • RSS 2.0 feed • Leave a response, or trackback