Re: LymeNUT topic: ILADS in Danger - Now we're in Danger

Sewer Rat wrote:
http://health.groups.yahoo.com/group/LymeUncensored/message/13

This is the post it links to:

Date: Sat, 28 Apr 2007 22:32:02 -0000
To: LymeUncensored@xxxxxxxxxxxxxxx
From: "georgialymegal" <georgialymegal@...>
Subject: ILADS in Danger - now we're in Danger

Quick Background (be patient for a couple of paragraphs for context):

Ideally, medical treatment guidelines protect both doctors and
patients. They act as a "peer reviewed" approach to diagnosing and
treating medical problems. By following them, doctors and patients can
feel comfortable knowing that other doctors are in agreement with how
the patient's particular disease or ailment should be treated.
Treatment guidelines are very powerful in this way.

Unfortunately, corrupt doctors and business people in the medical
community have figured how to exploit this power to fatten their bank
accounts. They publish phony and unscientific treatment guidelines
which serve their goals, make them wealthier- but often wind up
harming patients.

ILADS (International Lyme and Associated Diseases Society) is made of
many of the top experts in Lyme disease diagnosis and treatment in the
world. ILADS treatment guidelines recognize Chronic Lyme Disease and
recommend appropriate treatment for it, helping all of us and
`patients to come', to get well again; to move on with our lives.
ILADS guidelines were accepted and published by the National
Guidelines Clearinghouse, as part of the U.S. Department of Health and
Human Services. That's holds a lot of weight, and is credit to the
doctors who formed the guidelines.

IDSA (Infectious Disease Society of America) is made up of infectious
disease specialists. The IDSA treatment guidelines for Lyme disease
say effectively that Lyme patients are all nuts and should be locked
up for hypochondria, or something like that. They are so ridiculous
and in conflict with the bulk of medical science and study of Lyme
disease, that the Attorney General of Connecticut is investigating the
IDSA for possible criminal intent.

Currently, many doctors are using the ILADS guidelines to diagnose and
treat Lyme patients. Many of you who are reading this have probably
benefited at one point of other from these guidelines. But, as I write
this, the IDSA is also pushing hard to get doctors to adopt their
potentially criminal guidelines.

The Quiet Before the Storm:

Things seem pretty secure right now as far as the ILADS guidelines are
concerned. But, what would happen if the ILADS guidelines were
suddenly dropped by the National Guidelines Clearinghouse?

The only option left for doctors would be the seemingly evil IDSA
guidelines. Using these guidelines, MANY people will wind up horribly
sick, dead, or committing suicide, if not just losing years of their
life to Lyme disease, or suffering the permanent damage to their
bodies from it. Without ILADS guidelines, we will lose our treatment
options and doctors will lose their protection to be able to treat us.

Speak No Evil:

The CURRENT president of ILADS is Dr. Raphael Stricker. In October,
Dr. Stricker's term as president will end, and he will be replaced by
Dr. H.

I don't know Dr. Stricker personally, but believe that he is doing an
excellent job at ILADS on behalf of all of us who suffer from Lyme. I
thank him for this. The problem however isn't what he's doing right
now, it's what he MAY HAVE DONE IN THE PAST. And what would happen to
the credibility of ILADS if a story comes out in the media about his past.

For those of you who don't know about this, you need to. We all NEED
to know, because after all, he represents ILADS, which represents all
of us, and our needs as patients.

Read these links below:

http://members.forbes.com/forbes/2007/0312/096.html
Forbes article came out in March of 2007
(I just found out about this!)

http://grants.nih.gov/grants/guide/notice-files/not93-177.html
scroll to the end to the last 2 paragraphs

http://www.aegis.com/news/sc/1991/SC911114.html

In October, ILADS is presenting in Boston, Massachusetts- home to the
same doctors who's conflicts of interest in Lyme disease date back
before the first insurance claim denial for Lyme disease was ever
issued- The "bad" guys. The ones with enough money and power behind
them and their PR machine to convince the rest of the country, our
friends and our very own families, that we just might be
hypochondriacs, nuts, malingerers, or even "stalkers" trying to harm
our doctors. Sound familiar?

What happens if someone, hmmm, I can't imagine from where maybe an
opposing medical society somewhere, anonymously calls up the Boston
Globe and tells them about that ILADS is coming to town. Or worse (yet
more likely), a dash of corruption allows an article written by a PR
firm to pass into a major newspaper or magazine as being written by a
staff writer. In either case, I can assure that there will be mention
of a "big controversy over Lyme treatment". We know the media LOVES
controversy. Also, that "Harvard medical school" holds one opinion,
and that the esteemed IDSA and their 8,000 members, and even the CDC
support it, but that a "smaller" group of doctors, known for
over-prescribing" antibiotics to "antibiotic addicted patients",
believes something "radical" and different. And too bad for those
poor, Rocephin-addicted, victims of Lyme disease, in their blinding
hypochondria, they refuse to see that their own savior, Dr. Stricker,
might actually be a wolf in sheep's clothing- Someone who is profiting
from their suffering. Think of the title of the Forbes article -
"Ticks aren't the only parasites living off patients in
borreliosis-prone areas.". If you think this was investigative
journalism, think again. Also, email me so I can send you some links
to some books exposing the mechanics of the public relations industry.
Several good documentaries are very educational on this subject as well.

To those of you who think this sounds crazy, you probably haven't had
this disease very long. Hang in there, eventually you'll come face to
face with what I'm talking about, and will wind up like many of us,
collateral damage of a war of information, fear, greed, money and
politics. We're not in Kansas anymore. The stakes for Lyme disease are
huge, and a very effective PR machine is trying to squash us patients
and shut us up. Remember the PR piece "Stalking Steere" in the New
York Times? Great PR work, very successful. Horrible people and
intentions behind it however.

So, if Dr. Stricker is president of ILADS in October, imagine the
cover of the Boston Globe when or even before they arrive in Bean town-

"Lyme Doc's Dirty Past"
"Lyme, Scandals, and Even More Controversy?"
"Leading Authority on Lyme Discredited"
"Patients Led Astray Again"

The consequences of controversy in the media could be DEVASTATING for
Dr. Stricker. And, what happens to Ray Stricker, happens to ILADS.

What happens to ILADS, HAPPENS TO US.

If ILADS falls, we fall. And more people will continue to fall, with
each and every new, infective tick bite.

Think of the consequences of media event in Boston about Dr.
Stricker's past:

1) No Lyme-curious, Boston or New England doctor for that matter, in
their right mind will attend the ILADS function- for fear of being
associated with the negative publicity. Massachusetts doctors will be
disinclined to use ILADS guidelines in diagnosing and treating their
patients.

2) ILADS would be discredited, and the National Clearing House could
actually drop the ILADS guidelines. This would leave only IDSA's
guidelines left for doctors to follow.

3) ILADS could lose serious momentum and it's members start dropping
out for fear of becoming personally discredited by association to
ILADS, or out of fear of being peripheral targets of the PR machine
that is trying to shut Lyme doctors down and shut us up as patients.
If ILADS crumbles, how long would it take for another medical society,
and another set of treatment guidelines which acknowledge chronic
Lyme, to go into effect?

Think I'm nuts? Did you ever think that Dr. Jones would be the target
of a witch hunt? That Dr. Burrescano would close his practice? That
Dr. Steere would become the director of Rheumatology training program
at Harvard Medical School?

I don't know either way about Dr. Stricker's past, and I don't care. I
see what he does now and what he's doing for all of us, and it's
tremendous. I've heard that Dr. Stricker has been approached before
about his history but wouldn't make any statement about it. We may
never know if he did any wrong, maybe he didn't. But, he's got a bad
history now in the media. And, in the face of his upcoming change in
position at ILADS and this upcoming function in Boston-

what I also see is WHAT ILADS is not doing. They could easily just
push the transition of the position of President a couple of months
ahead of schedule. ILADS could act, and

AVERT A POSSIBLE DISASTER.

Remember, what happens to Dr. Stricker, happens to ILADS, and happens
to us. We are unfortunately, and necessarily again, in the position at
the bottom of this hill. And dirty water flows downward.

What is a couple of months out of a couple of years term? The risk of
Dr. Stricker being president at the Boston ILADS conference vs. the
costs of pushing the transition of presidency ahead of schedule by 2
months seems to be a no brainer. I don't think Dr. Stricker would be
so petty as to feel a need to serve out 2 more months of his term in
light of the risks.

I know Lyme docs well, like many of you do too, I'm sure. They have NO
TIME. They are the most overstretched, spread thin people in the
medical industry. To presume that they have the time and resources to
be able to sit on their butts like we do (disabled at home) and
carefully consider the political aspects of their situation, and
strategically prepare for them, is by my estimate overly optimistic,
if not outright unrealistic. I know some of you have seen these docs
present at conferences, and many of them come across as what they are-
doctors who are immensely involved in the medical aspects of Lyme
disease. Few if any come across as diplomatic or politically savy. We
have only to be thankful for the efficacy of our own treatment that
they spend their time in the medical science and not watching the
media, or what the "bad guys" are up to.

It's not to say ILADS doesn't have strategic plans. But, there are
only so many fires they can deal with. This particular issue may be a
bit too uncomfortable for the people in ILADS to bring up with Dr.
Stricker. That's where we as patients give ILADS members an "out", a
reason to push the transition of president ahead of schedule- because
we patients (they need us, we need them) are expressing a significant
amount of concern about it.

So, I'm asking for you to consider my concern. Consider the situation,
and if you agree, please contact ILADS (see below) and ask any of
these members to consider making a small change in their policy, and
to hasten their usual 2 year ceremony a couple months ahead of
schedule. Before any literatur goes out advertising the event with Dr.
Stricker's name as president.

Let's help disarm and prevent an ambush of the anti-Lyme PR machine
and becoming collateral damage of a careless media story. We can't
afford to keep being collateral damage. We are losing docs here and
there, but what happens if we lose the docs' docs? Then we're really
going to be in trouble.

ILADS should simply expedite the transfer of position of president
ahead of schedule.

MEMBERS TO CONTACT AT ILADS:

It's vital that we are respectful of any of these people who we
contact. Please do not email them anonymously, and of course, be
polite in your suggestions and how you express your concerns.

Barbara Buchman Executive director of ILADS
301-263-1080
lymedocs@...

Dr. Andrea Gaito
jslutzmd@...

Mitch Hoggard at ILADS
mitch@...

Dr. Dan Cameron at ILADS
lymeproject@...

Richard Horowitz, MD
kalachakra108@...



- Georgialymegal
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