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» LymeNet Flash » News and Information » Press Releases / News » Meeting Reminder and NJ Protest Rally Information

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Author Topic: Meeting Reminder and NJ Protest Rally Information
Lou B
Member # 64

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This message sent from the Lyme Disease Association of Southeastern
by Harvey L. Kliman
Next regular meeting is Wednesday May 21 at 7PM in the Kennett Square
Friends Meetinghouse.

Martin Fried, MD will be speaking at 7:00 PM. The topic of his presentation
is "Rashes Associated with Lyme, Bartonella and Mycoplasma." There's more
about Dr Fried on our web site.

Dr Fried is well informed about most aspects of Lyme disease and other
tick-borne diseases, despite what might seem to be a limited topic. I'm
sure you'll be able to find out much more about Bartonella, one of the
rapidly increasing coinfections of Lyme disease. Bartonella, also known as
cat scratch disease appears to be a much more serious illness when
contracted from a tick bite and especially so when accompanied by Lyme

========= OTHER NEWS ============
Thank you for responding to the Lyme Rights requests for phone calls and
special thanks to those of you who were able to make it to Long Branch NJ
for the protest. We have photos and links to a video of the protest rally
on The thank you and Pat Smith's letter are also on the
web site. Over 100 people showed up!

Below ia the letter Pat Smith wrote and the Lyme Rights Thank You which is
more extensive than mine above.
================= by Pat Smith ================
Behind the Scenes of the Pallone Decision:

Congressman Frank Pallone Prevents Patients from Receiving Lyme Treatment,
Rubber Stamps IDSA, Excludes Patients

Dear Lyme Community,

I apologize in advance for the length of this letter, but you need to
understand what is happening to you and why.

Last night, Congressman Christopher Smith, bill sponsor, and a friend and
leader to the Lyme community, called me to provide words of encouragement
after a very discouraging day. He told me to tell you how sorry he is for
everyone suffering out there and for what happened that day and he asked
that I tell you that he is "outraged" at this bill decision. He said we must
not give up, what we are doing is right and just, and that he will never
give up until this bill is passed, a bill which he feels has the ability to
go a long way to melding research dollars and policy for Lyme disease. He is
a bright light in a world filled with those who lack substance and

What follows is the reason for his message. In an act reminiscent of the
ones IDSA has been rebuked for by Attorney General Blumenthal of
Connecticut, Congressman Frank Pallone, House Health Subcommittee Chair,
rubber stamped IDSA and its guidelines.

Shocked and saddened are two words that come to mind to describe how I feel
about what occurred yesterday in my own state, my own county. The Chair of
the very committee in the House of Representatives that is charged with
reviewing bills which affect the health of people across this country today
took an unprecedented step-he capitulated to the powerful Infectious
Diseases Society of America (IDSA). The IDSA was under investigation by the
Attorney General of Connecticut for a year and a half, and it has been
forced to scrutinize its Lyme guidelines under the oversight of a specialist
in conflicts of interest.

Rather than own up to the misconduct of its members, the IDSA is publicly
denying culpability in the matter. Rational people must examine why a
Society would settle if there were nothing to the AGs allegations as this
powerful Society claims. The Attorney General found significant conflicts of
interests for the panel member of the guidelines, bias in the selection of
participants, suppression of scientific evidence, blocking of divergent
viewpoints and foreclosure of treatment options for patients. These are the
types of findings that a responsible medical society would take seriously
and would launch an internal investigation into the guidelines panel.

Rational people must also examine why Congressman Frank Pallone would chose
to endorse IDSA over patients nationwide, patients in NJ, and his own
constituents. Mr. Pallone has chosen no treatment for chronic Lyme patients,
no alternative treatments and no supplements. This is the IDSA philosophy,
the one whose development was investigated, whose development was
challenged, whose philosophy development was found by the Attorney General
to be riddled with conflicts of interest and exclusionary conduct. Yet
yesterday, during the protest outside his Long Branch office, Mr. Pallone
issued a press release saying he would not post the Lyme bill until the IDSA
convenes its new guidelines' panel and issues a decision. This panel is part
of the settlement which was forced upon the IDSA by process and by threat of
legal action by the AG. After the new panel convenes and deliberates, Mr.
Pallone has given IDSA carte blanche to make its recommendations to Congress
about the Lyme bill, a bill which does not relate directly to treatment but
relates to monies for much needed research and a much-needed voice for Lyme
patients and treating physicians. What does this mean to patients? He has
knowingly placed the fox in charge of the hen house, a fox already caught
with chicken feathers dangling from his mouth.

One might also wonder why IDSA was in DC on Friday after the AG settlement
with a lobbyist, their CEO, their lawyer and a new man on their team, Dr
Phillip Baker. Dr. Baker is the former NIH Lyme Disease Program Officer on
whose shift the Klempner study was approved, terminated early, and
subsequently touted as the kiss of death for all extended antibiotic
treatment for Lyme patients, although the conclusions drawn by the authors
were nothing more than a sham attempt to halt treatment for patients. At a
meeting I attended related to the Klempner study, Dr. Baker allowed
researchers who were anti chronic Lyme to publicly trash treating
physicians, researchers and even a patient who was present, all in the name
of science. It was so bad, I wrote a letter to him when I arrived home
expressing my horror at how unprofessionally this government-sponsored
meeting was run.

Industry interests continue to drive government. A primary example of this
"revolving door" between industry and government officials is demonstrated
by the fact that Dr. Baker is now advocating for the IDSA. Given Baker's
affiliation with the commercial interests of a medical society, it is now
clear that there never was anyone involved in that Klempner study that
viewed his job as protecting patients or the public health.

How does this relate to what happened in NJ today? What we have here is a
cartel of vested interest masquerading under the banner of science. This is
not about patients, it is not about the greater good, it is about greed.
Patient health has been sacrificed by IDSA to pave the way for those who
hold patents, those who have an interest in Lyme testing and vaccines, and
those who have a consulting relationship with insurance companies. Dr.
Baker's now public alignment with the commercial interests of the IDSA, and
now it would seem, patients' own elected representative's alignment, show
how powerful commercial interests in medicine can drive healthcare and
exclude the interests of patients, entirely.

We understand that the IDSA went to Washington the very day after the
Attorney General announced its findings of conflicts of interests,
suppression of scientific evidence, and denial of treatment options for
patients, and met with Mr. Pallone's Committee Members. What Mr. Pallone has
done is tell Lyme patients that their ability to have research hinges on the
decision of a private medical society that has commercial interests in the
results and that has been under investigation for allowing its panel of
researchers with extensive commercial interests to corrupt its guidelines'
panel. Essentially, he is delegating public policy decision to a medical
specialty society whose guidelines are under scrutiny and that has evidenced
a profound lack of accountability and responsibility in policing the rampant
conflicts of interests of its panel members.

Yesterday, patients in wheel chairs, and IV drips, and mothers whose
children are out of school for years peacefully picketed Congressman
Pallone's office and carried signs and did chants at a protest organized by
the grass roots Lyme Rights Group. Reporters and radio media attended and
many interviews were conducted. Suddenly one reporter on some silent cue
left the patients to rush inside to pick up a statement issued by Mr.
Pallone's office. No one else was then allowed to have the statement. I
asked the reporter if I could borrow it, and I read to a stunned crowd the
news that essentially Pallone supports and endorses the IDSA. I requested
from his office a copy of the release. They refused to provide it, telling
me it was available online. Obviously I had no access and again requested
the document. They told me they were not authorized to give me the document.
But you gave it to the reporter I said, well, they replied, that was
authorized. I reiterated, so the Congressman issued a public document but
would only provide it to a reporter-wouldn't even provide it to a
constituent who was right there. Silence followed.

While this transpired, that constituent of his was trying without success to
gain an appointment with Mr. Pallone, a process that began months ago when
Congress was on break. They refused then and now to grant her a meeting. She
asked what she could do to get this meeting as her nephew is in a wheel
chair due to Lyme. They could offer no insights, so I suggested she join the
IDSA. It seems that one must be wealthy, powerful, and being investigated to
gain the attention of Mr. Pallone.

Most Lyme patients do not fit those categories. However patients have
something which IDSA does not have, they have numbers, commitment, no vested
interest to get in the way, and they now have a large combined voice which
stretches across this great country of ours. It is now obvious to all that
this voice must be raised loudly and often in DC, NJ, CA, CT, MN, NY, PA,
TX-- every state of the union. All of us nationwide need to start in NJ
today. We need to be respectful, we need to be angry, we need to be
unrelenting in our quest to dismantle this amoral cartel. We start by
calling, faxing, visiting, emailing Congressman Pallone's DC office. We must
be relentless. We must let them know that patients are out here. Patients
will not tolerate being ignored. Patients will not rest until Mr. Pallone
puts their health above moneyed interest. No stone can be left unturned.

If we allow IDSA to manipulate us through its representative in Congress
(Mr. Pallone), in a year we will find ourselves in an untenable position.
Congress will not only have turned its back on us entirely, but the IDSA
will get a bill of its choice, a political plum that they have "earned" in
some manner which we have yet to uncover, but we will. Meantime, tens of
thousands more people will become sick and tens of thousands of those
already sick will be further banished to obscurity as they await their death
sentence without treatment.

This message is long, but you need to understand, your plight as a Lyme
patient has now been placed in jeopardy again with a casual but deliberate
action taken by Mr. Pallone to revoke any rights you may have had to
treatment. The time for action is today, tomorrow and all the tomorrows to
come until we find out what is really behind this great Lyme cover-up that
denies you, the patient, a basic human right--the right to be treated for
your disease.

Pat Smith President LDA
May 9, 2008

Hi Everyone,

A warm and sincere thank you to the patients, families and members of the
Lyme Community who came to NJ to attend the LymeRights Protest on Wednesday
May 7th to demand Congressman Frank Pallone schedule our Lyme Bill, HR 741
for a Hearing. Thank you to the thousands of callers across America who
demanded to be heard!

We know it was a hardship for the many that came. For those who could not
come, know we were there for you! We felt your spirit and presence. It was
a sight to be proud of, over 100 people lining both sides of Broadway with
signs, chanting and conviction!

Unfortunately, Mr Pallone appeared to have already written a press release
with his decision. He feels that there is no reason to hold a hearing on the
legislation until after the IDSA treatment guidelines have been reviewed.
That's right, he thinks that we do not need research into a reliable test,
research into more effective treatments, education of the illness or any
prevention efforts.

Mr.Pallone does not consider Lyme patients and our Bill, HR 741 a priority.
He is bowing to the pressure of the Infectious Diseases Society of America.

Together we are a strong voice that Congress will hear! Our lives will not
be ruled and destroyed by 14 members of the IDSA whose corruption and
ulterior motives are riddle with conflicts of interest.

I urge each and everyone of you to read the letter Behind the Scenes of the
Pallone Decision, written by Pat Smith, President of the Lyme Disease
Association. Keep those calls going to Pallone's office and tell him you
want the Lyme Bill brought to a hearing, but also let him know you read "The
Letter" and you know what is going on behind the scenes!!

We will not let this be the end, we will continue to call Mr Pallone's
office and Mr Kennedy's office until we are heard.

Thank you from all of us for your passion and your support!

Lou B

Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator

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