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Research Gaps in Lyme Disease Exposed in the Congressional Record

Groups Withdrawal from IOM Prompts Changes in IOM Agenda

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Stamford, CT (PRWEB) October 6, 2010

In an effort to raise awareness about the difficulties facing patients with Lyme

disease, on September 29, 2010, Congressman (NJ) introduced

into the Congressional Record a report that exposes the research gaps in Lyme

disease. The report was submitted by three of the nation's most influential Lyme

disease organizations, the NJ based national Lyme Disease Association (LDA), the

California Lyme Disease Association (CALDA), and Connecticut-based Time for Lyme

(TFL). The report was originally commissioned by the Institute of Medicine (IOM)

study group as part of a scientific workshop which was initiated through

Congressional Appropriations language. The three groups objected to the IOM

process which permits bias on the workshop committee and lack of transparency,

and they asked the help of to allow their concerns to be heard in a

credible venue.

The report presents the patient viewpoint on gaps in the science of Lyme

disease, and includes areas of biomarkers, proteomics, pathophysiology, patient

oriented research, treatment options, strain variation, persistence and testing.

Antiquated Lyme disease testing is the central issue which fuels the Lyme

controversy. Unlike HIV, which had a gold standard test in less than 10 years,

Lyme disease does not have one 35 years into the disease. Less than 50% of

patients test positive with conventional antibody tests. Treating physicians

have argued against over-reliance on testing for diagnosis and treatment,

relying instead on clinical judgment with testing as an adjunct.

Lyme advocacy groups saw a need to assess the state-of-the-science and advocated

for a conference by the National Institutes of Health (NIH). NIH requires

transparency and inclusion of all stakeholders and permits the exploration of

broadly diverse scientific viewpoints. NIH policies also guard against bias on

the planning committee.

Instead of using its own process, NIH contracted the workshop out to IOM. The

IOM's mission was to provide " independent, objective and non-partisan " advice to

policy makers, yet the majority of the participants sitting on its Lyme disease

panel belong to the Infectious Diseases Society of America (IDSA), a medical

society with a known bias. The hearing panel ignored the Lyme advocacy groups'

frequent requests for transparency and a balance of scientific viewpoints, as

delineated in Congressional Appropriations language. The groups felt they had no

choice but to protest the process integrity and withdrew their support of and

participation in the program.

The Lyme advocacy groups expressed their belief that this amount of bias would

undermine the integrity of the scientific workshop and that its final report

would reflect this lack of objectivity. Rather than participate in a process

that the groups believe may harm patients, the groups had their report entered

into the Congressional Record to ensure that its contents would be shared widely

both with Congress and the public.

See Congressional Record No.133 Book II Vol. 156 No. 133 E 1872 or go to:

http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:

After the withdrawal of our advocacy groups, the IOM appears to have responded

by commencing review of its agenda. We applaud this. It is noteworthy that

Luft, a leading investigator on the use of high throughput technologies

to decipher the myriad manifestations of Lyme disease has been added after that

review. Although this will undoubtedly bring new openness to the discussion, it

is hoped that further modifications will be made to correct a flawed agenda.

Although the groups are heartened to see movement in the right direction, they

remain skeptical that the process will lead to a true understanding of the

patient's needs. In a jointly prepared statement, the groups stated: " It's one

step—but we are cautious. The IOM needs to commit to making this entire process

unbiased so that the true state of the science can be explored, and we can make

the type of progress on this disease necessary to develop diagnostic tools and

treatments that help restore patients to health. That is what this should be

about. "

http://www.prweb.com/releases/2010/10/prweb4613674.htm