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Lyme Disease: patient support, research & information.

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Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

Reply from: ThoughtCriminal
Date: 11 Apr 2008, 22:24
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

Take ownership-- CRUSH IDSA'S TREACHERY-- CALL YOUR CONGRESSMAN TODAY!


Topic: Lyme Disease Physicians and Patients Expose Research Group's
Ploy to Silence Them
Bobidor
Frequent Contributor
Member # 14453

posted 10 April, 2008 02:03 PM
--------------------------------------------------------------------------------
I received this message from CALDA today:

The California Lyme Disease Association, the national Lyme Disease
Association and Time for Lyme distributed the following press release
on April 9, 2008, regarding the IDSA's recent attempt to kill federal
legislation that would provide funding for Lyme research and give
patients a voice in research needs. To help get this bill passed in
the Senate and House, see instructions below the release.

Lyme Disease Physicians and Patients Expose Research Group's Ploy to
Silence Them

Already caught up in an anti-trust investigation, IDSA opposes
research bill in order to maintain monopoly over Lyme diagnosis and
treatment options

Washington, DC - Physicians specializing in treating chronic Lyme
disease and a national coalition of Lyme disease patients and their
families today accused a medical research group of trying to exercise
monopoly control over research on Lyme and tick-borne diseases.

"We're very disappointed," said Pat Smith, president of the national
Lyme Disease Association (LDA), responding to a letter to Congress by
the Infectious Diseases Society of America (IDSA) that seeks to deny
patients a voice regarding the research needed to better understand
the disease.

Lyme disease is a serious bacterial infection that develops from the
bite of an infected tick. The disease is often misdiagnosed or goes
untreated, causing many patients to suffer persistent health problems,
including neurological disorders, crippling muscle and joint pain,
disabling fatigue, psychological disorders, and even death. Even when
Lyme disease is caught early and treated with a short course of
antibiotics, the debilitating symptoms can persist and require
additional longer-term treatment.

In March, IDSA wrote Congress attacking the Lyme and Tick-Borne
Disease Prevention, Education and Research Act of 2007, introduced by
Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and
Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE)
in the Senate. The broadly supported bipartisan bill calls for
acceleration of Lyme disease research and creates a new federal
advisory committee made up of the full range of scientific viewpoints
on Lyme, including a seat for patient advocacy groups.

The IDSA is currently under investigation by the Connecticut Attorney
General for abuse of monopoly power and exclusionary conduct in
formulating its Lyme disease guidelines, which were developed by a
panel that held significant commercial interests in diagnostic tests,
vaccines, and consulting arrangements. In its letter to Congress
opposing the Lyme Bill, the IDSA failed to mention this ongoing
investigation.

IDSA researchers have virtually controlled Lyme disease research for
the past 30 years amidst ongoing controversy surrounding its
guidelines, which deny patients the right to treatment options and
undermine the ability of physicians to use their clinical discretion
in treating patients. IDSA provides private health insurance companies
with the basis for denying long-term treatment for chronic Lyme
disease.

The California Lyme Disease Association (CALDA), national Lyme Disease
Association (LDA) and Time for Lyme (TFL) are non-profit organizations
that were founded by individuals who had personal experience with Lyme
disease, in order to address the lack of research, education and
support services available for this newly emerging infection.

If the IDSA gets its way, this bill will die without ever having a
public hearing. If you don't want that to happen, here's what to do:

Right now, the bill is stalled in two Congressional subcommittees (one
in House, one in the Senate.) If the committee chairmen do not release
the measures for a vote, the Lyme bills will die. We would then have
to wait until next year to start the process all over again.

Click here for a list of states with members on the committees:

http :// www .lymediseaseassociation.org/HR741/HR741.html#Actions

If your state is listed, click for contact information. Urge your
representatives to contact their committee chairmen and request a
hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator
on your list, have him/her contact Senator Edward Kennedy (MA),
chairman of the Senate Health, Education, Labor and Pension Committee.
If it is a member of the House, have him/her contact Congressman Frank
Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.

Phone your representatives in their DC offices during regular business
hours. It's quick and easy. The staff will tally all calls they
receive.

If your state is not listed, see "other actions needed by individuals"
at the above link.

Actual bill text:

http :// thomas.loc.gov/home/thomas.html

Click Bill # and type S 1708 or HR 741.




Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 12 Apr 2008, 00:10
Re: ot

On zzzzzzzzzzzzzzz

Reply from: ThoughtCriminal
Date: 12 Apr 2008, 04:11
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 11, 6:10 pm, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzz


Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 12 Apr 2008, 05:18
Re: ot

On zzzzzzzzzzzzzzzzzzz

Reply from: ThoughtCriminal
Date: 12 Apr 2008, 06:01
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 11, 11:18 pm, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzzzzzz


Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 12 Apr 2008, 06:24
Re: zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

On zzzzzzzzzzzzzzzzzzz

Reply from: ThoughtCriminal
Date: 13 Apr 2008, 04:30
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 12, 12:24 am, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzzzzzz


Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 14 Apr 2008, 04:21
Re: xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

On zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz


Reply from: ThoughtCriminal
Date: 14 Apr 2008, 14:28
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 13, 10:21 pm, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Chuck-- ... you're either being paid to edit these titles and to
suppress debate on a grave matter of public health -- OR you have
obsessive compulsive disorder.

The large red ticks are out in full force in my area -- hundreds of
them crawling through my property..... This is an environmental
nightmare of the gravest concern to public health -- and you're at
your keyboard insanely trying to suppress debate and information --
what kind of a lunatic are you?

EVERYONE HERE-- DON'T BELIEVE A OBSESSIVE MADMAN LIKE CHUCK--- CALL
YOUR CONGRESSMAN TODAY AND AS FOR A HEARING ON THE LYME DISEASE
BILL!!!! NOW !


Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 15 Apr 2008, 02:09
Re: zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

On zzzzzzzzzzzzzzzzzzzz


Reply from: ThoughtCriminal
Date: 17 Apr 2008, 15:59
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 14, 8:09 pm, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzzzzzzz


Reply from: Chuck Adams- Newsgroup leader since 1997
Date: 18 Apr 2008, 02:53
Re: zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

On zzzzzzzzzzzzzzzzzz

Reply from: ThoughtCriminal
Date: 21 Apr 2008, 21:57
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them

On Apr 17, 8:53 pm, Chuck Adams- Newsgroup leader since 1997
<chuckadam...@aol,com > wrote:
> On zzzzzzzzzzzzzzzzzz


EVERYONE HERE-- DON'T BELIEVE A OBSESSIVE MADMAN LIKE CHUCK--- CALL
YOUR CONGRESSMAN TODAY AND AS FOR A HEARING ON THE LYME DISEASE
BILL!!!! NOW !







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