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» LymeNet Flash » Questions and Discussion » Activism » ILADS Letter to IOM: State of the Science

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Author Topic: ILADS Letter to IOM: State of the Science
Tincup
Honored Contributor (10K+ posts)
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IOM panel and selected speakers for Lyme Disease and Other Tickborne Diseases: The State of the Science

14 September, 2010

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

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
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More...

LYMEPOLICYWONK: ILADS Weighs in on IOM Process
14 Sep

Today, ILADS sent a letter to the IOM expressing its concerns about the lack of balance in the panel and the speaker list for the Lyme State of the Science conference.

Not surprisingly, it was concerned primarily about the exclusion of ILADS physicians from presenting at the conference and with the large roles handed to Dr. Wormers, chair of the IDSA Lyme guidelines panel, and Dr. Aguera-Rosenfeld, who until recently worked at NYMC with him, are both known to have biased views regarding the diagnosis and treatment of Lyme disease.

Exclusionary conduct on the part of the IDSA has prevented the type of scientific debate that is essential to understanding where the science in Lyme disease rests.

ILADS took issue with the large roles handed to the IDSA in the diagnosis and treatment issues at the conference, stating: ``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.''

Lyme treatment research has been plagued by sample sizes that are too small to measure clinically relevant treatment effects and that do not reflect the types of patients seen in clinical practice.

The link to the ILADS letter follows the jump. . .

Full Story

http://www.lymedisease.org/news/lymepolicywonk/551.html

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
Honored Contributor (10K+ posts)
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LYMEPOLICYWONK: Institute of Medicine Cuts on the Bias for IDSA
14Sep

Finally, the Institute of Medicine (IOM) came out with its agenda for their ``State of the Science Hearing''after much hemming and hawing.

Patient groups (including CALDA) who asked for transparency in the study process received a mere ``no comment'' response.

Well, we never got transparency, and we only got the agenda after it was finalized and released to the public. So, here's the score: its 3 for 3 in the `Final Inning' in favor of the IDSA.

Four of the 6 IOM panel members are IDSA members. 10 of the 14 physician speakers were authors on the IDSA guidelines or the copycat guidelines issued by members of the IDSA panel or members of the IDSA.

Zero ILADS physicians have been chosen to speak.

Let me repeat: ZERO, zip, nada, not a single ILADS physician was chosen to speak!

Dr. Gary Wormser, poster boy of the Connecticut IDSA antitrust investigation, is kicking off the game. Oh, there's window dressing to be sure.

A personalized tour of the Agenda after the great leap forward. . .

Full story

http://www.lymedisease.org/news/lymepolicywonk/550.html

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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Here's the contact info in case we feel like discussing the missing ILADS standard of care -

202-334-2352, [email protected]

Would it make sense to communicate to the initial level of government that handed the task over to the IOM that this process is not going to work because of the exclusion of the second standard of care, which is a more thorough and experienced one?

[ 09-16-2010, 06:16 AM: Message edited by: Robin123 ]

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levity101
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Robin,
are you saying that we can call this number to protest the exclusion of ILADS standard of care? is that the IOM?

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LPurdy1040
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When I contacted IOM about this, I was told this wasn't a meeting to discuss treatment. Christine informed me they were only asked to look into the science and research.

This is a quote from the IOM website: "At the request of the NIH, National Institute of Allergy and Infectious Diseases, the IOM will convene a committee to plan and conduct a scientific workshop to assess the state of the science of Lyme and other tick-borne diseases. The workshop will represent the broad spectrum of scientific views on Lyme disease and should provide a forum for public participation and input from individuals with Lyme disease as requested in congressional appropriations report language in House Committee Report 111-120 and Senate Committee Report 111-66."

I still think they could of considered some of the ILADS doctors that have done research. Even if they are treating physicians they have still done research. They at least could of made it more balanced that way.

Linda

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Tincup
Honored Contributor (10K+ posts)
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I agree with Linda.

No sense in calling now Robin 234357364... but it is a compelling thought and it is so good to see that you had one. It is about time!

[lol]

Actually, if you hang tight there should be some news coming out soon-possibly as early as tomorrow morning.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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John S
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He has two until recently's in one section. I think he just needs one.

Obviously it is a sham proceeding.

Posts: 743 | From New York | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

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