Wednesday, 15 September 2010


How to leave sick people sick- ignore everyone with a different opinion.

A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes
details here

On first reading this, most Lyme Disease patients would think, good at last all will be put out in the public domain and discussed openly.

Not a bit of it, even to the uninitiated it is not difficult to see that none of the ILADS doctors are presenting.

Yes those doctors around the World who are involved with treating Thousands of patients for Lyme disease most of which improve on their treatments, are not included. ILADS doctors do not just treat Lyme Disease but the many co infections that IDSA members conveniently ignore.

Many patients who fail the short courses of treatment doled out by IDSA doctors just move along and find a good Lyme literate doctor who is prepared to consider that for some ILADS treatment guidelines are needed.

How will the IDSA doctors ever learn if they close their ears and minds to alternative views?

Has science stopped evolving when it comes to Lyme Disease?

When you have been in so much pain and disability, from in my case Arthritis and muscle weakness and after months of antibiotics clawed your way back to nearly 100% health is it any wonder the patients advocate for a more open process.

Below is a letter to the IOM from the President of ILADS.

IOM panel and selected speakers for Lyme Disease and Other Tickborne Diseases: The State of the Science

Dear Dr. Coussens: I am writing on behalf of the International Lyme and Associated Diseases Society (ILADS) to express our disappointment with the lack of balance in the selection of the IOM panel and speakers for the “State of the Science” review of Lyme disease.

The science in Lyme disease has been a topic of great debate and polemic viewpoints. The two viewpoints are reflected in Lyme guidelines from the Infectious Diseases Society of America (IDSA) on the one hand and the Lyme guidelines from ILADS on the other, both evidence-based.

It is of great concern that four of the six panel members selected by the IOM are IDSA members because IDSA is known to have a strong institutional bias in its interpretation of the science in Lyme disease. In addition, IDSA has been investigated by the Connecticut Attorney General, who found extensive conflicts of interest and suppression of scientific evidence in the guideline development process. The fact that IDSA ultimately vindicated its own guidelines through a self-selected review panel that excluded treating physicians and was comprised almost exclusively of IDSA members should be no surprise given the bias of the review panel.

There is a significant disconnect between IDSA and the community of physicians who treat Lyme disease. There is also an urgent need for transparency in recognizing the limitations of the existing Lyme research. The bulk of the research on Lyme treatment has been controlled by IDSA researchers. Their research is based on sample populations that do not reflect those seen in clinical practice. These researchers then apply their interpretation of their own research (in which they have a vested interest in terms of personal reputation, academic careers, and commercial interests related to diagnostic tests, vaccines, and expert witness fees) to clinical care through guidelines, resulting in enormous harm to patients.

Dr. Willy Burgdorfer of the National Institutes of Health and discoverer of the Lyme spirochete, puts the research into perspective: “The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people that have for the past 30 years produced the same thing— nothing.”

In particular, we have grave concerns that:

· The speakers do not include any physicians from ILADS, many of whom have published in peer-reviewed journals, conducted clinical research, and are extensively familiar with the science related to Lyme disease;

· Dr. Wormser, who authored the IDSA guidelines and ran the guidelines panel that suppressed non-conforming evidence, is the only person addressing the state of the science and gaps, and as the first speaker he will frame the issues for the conference without opposing viewpoints being presented;

· Dr. Aguero-Rosenfeld, who, until recently, worked for Dr. Wormser until recently, is the key speaker on laboratory testing, and opposing viewpoints on this topic will not be presented;

· Seven of the speakers were either members of the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;

· Over 70% of the physicians awarded the key 25 minute speaking slots are either members of IDSA or sat on the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;

· Researchers and physicians who are more open-minded in terms of understanding the treatment implications of research for chronic Lyme disease were either excluded from speaking, relegated to topics that are not their specialty, or placed on panels where their time to speak will be severely limited.

We do not believe that the selection of the “State of the Science” panel or the speakers reflects the diversity of scientific viewpoints in this highly controversial area. This lack of balance and diversity will necessarily erode the integrity of the process and the results. We encourage you to revamp the process to address these issues.

Sincerely yours,
Dr. Robert Bransfield, MD, DLFAPA
President, ILADS

see details on CALDA blog also
here here and here

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