FWD: IOM workshop

[Guest guest]

Just passing this along...

From: [mailto:nw.hiker@...]

Sent: Monday, September 27, 2010 5:20 PM

nw.hiker@...

Subject: Please support the protest of the planned IOM workshop

Hi,

I know that those of you who are members of the OLDN group are already

aware of the upcoming IOM (Institutes of Medicine) Workshop. I am including

OLDN in this email distribution as I want to apologize to Theresa Denham and

those on OLDN. It was not my intent for my previous email to be sent to OLDN.

I had only planned on it being sent to Theresa and some of the other leaders. I

had received conflicting information on whether or not to support the LDA (Lyme

Disease Association), CALDA (California Lyme Disease Association) and others

withdrawal from this workshop, and was looking for more input to form an

opinion.

For those that are not aware, the IOM is holding a workshop to assess the state

of science concerning Lyme and other tick born diseases. This workshop was

commissioned by congress largely through the efforts of one congressman to

determine the state of science on Lyme and other Tick-Borne Disease. By mandate

of congress the workshop was to be unbiased in that it was to present a broad

spectrum of scientific views. This is even stated on the IOM website " The

workshop will represent the broad spectrum of scientific views on Lyme disease "

.. Well, unfortunately this is not happening. The view presented will be

largely that of the IDSA (Infectious Disease Society). In protest of this some

of the Lyme groups have decided not to attend. The following is a link to a

petition to let congress know that you support the LDA, CALDA and others

withdrawal from the conference due to this injustice.

Petition in support of Lyme Groups' decision to withdrawal from the Lyme

Workshop

I have signed this petition and I would also encourage you to do so. Even

though there is not consensus among the Lyme community on whether it is in our

best interest to attend or not, *ALL* agree that the workshop as presently

planned will not fairly represent the various views as was mandated by

congress. I myself do not know if withdrawal is in our best interest, but by

signing the petition I really do not have to. That is not the issue. The issue

is the injustice of the planned IOM workshop. I am saying that I agree with the

LDA, CALDA and others in protesting the injustice of the planned workshop. The

withdrawal is just the way they have decided is best to protest. By signing

this petition you are adding your voice along with the Lyme organizations that

have withdrawn that you believe the planned agenda is in violation of the

mandate by congress. We need all the voices we can get.

Theresa Denham who is the president of the Oregon Lyme Disease Network, along

with others from Oregon that have been involved in the political aspects of Lyme

believe the decision to withdraw from the workshop is the correct one. I do not

have the experience or the knowledge to make a determination myself. Theresa

has provided very helpful information on the background to the IOM workshop.

The following two emails are from Theresa. I have also included an email from

Lyme advocates who have chosen to attend the IOM workshop.

Sincerely,

----- Forwarded Message ----

From: Theresa Denham <theresa@...>

OLDN ; sraffety@...; sleesold@...; JAMES BLANCO

<kblanco1@...>; judi johnston <judsold@...>; jackie yow

<quliz1@...>

Sent: Fri, September 24, 2010 9:21:16 AM

Subject: [OLDN] Please support the withdrawl from IOM conference

LDA, Time For Lyme, CALDA and others are stepping out of the IOM hearings

because the review panel is supported ¾ by the IDSA. The panel is lead by

Wormser, who has taken financial support from those who wish to base treatment

on a financial model presented by the insurance industry and to support pharma

through use of " other long term drugs which have high profit margins and don't

treat the underlying disease " .

Please pass this on asking others to sign the petition. We hope for 1000 or

more on this petition.

http://lymediseaseassociation.org/index.php?option=com_content & view=article & id=7\

10:support-lyme-groups-decision-to-withdraw-from-iom-lyme-workshop & catid=128:hhs\

national-institutes-of-health-nih & Itemid=563

Theresa Denham, president

Oregon Lyme Disease Network

a 501(3)C non profit corp.

541-312-3081

lyme@...

www.oregonlyme.org

----- Forwarded Message ----

From: Theresa Denham <theresa@...>

OLDN

Cc: <nw.hiker@...>

Sent: Fri, September 24, 2010 6:16:36 PM

Subject: RE: [OLDN] Please support the withdrawl from IOM conference

I am not sure that it is understood what has transpired over the past few years

in regards to the IOM hearing and congressional hearings on Lyme Disease, or

reaching further back similar NECM hearings.

I am not saying that I am the only authority, but what I do know is the

following "

US CONGRESS through their representatives instructed and mandated AN ARM OF THE

FEDERAL GOVERNMENT (NIH) to covene an UNBIASED HEARING on Lyme disease and the

state of the science, with full intentions of BALANCE of viewpoints. This

hearing was supposed to include evidence based medicine, information from

practicing physicians, IDSA, ILADS and patient advocates. This hearing was then

subcontracted to the Institute of Medicine (IOM).

The Institute of Medicine is a not-for-profit, non-governmental American

organization founded in 1970, under the ***congressional*** charter of the

United States National Academy of Sciences "

" It works outside the framework of the U.S. federal government to provide

***independent*** guidance and analysis and relies on a volunteer workforce of

scientists and other experts, operating under a rigorous, formal peer-review

system. The Institute provides ****unbiased,**** evidence-based, and

authoritative information and advice concerning health and science policy to

policy-makers, professionals, leaders in every sector of society, and the public

at large. "

NIH was **mandated** by FEDERAL GOVERNMENT to hold an UNBIASED hearing. They

subcontracted to IOM who was mandated by FEDERAL GOVERNMENT in the terms of

their creation,

- - - " to provide ****unbiased,**** and factual information " to policy-makers,

professionals, leaders in every sector of society, and the public at large. "

That means, BTW, not just to provide Congress with a an unbiased report out of

an unbiased hearing, that means provide YOU with an unbiased report from an

UNBIASED hearing as part of that public-at-large that they [iOM] are obligated

to.

The concern is that the creation of the IOM is supposed to be voluntary, and

unbiased. At this point the committee consists of 75% or more of highly paid

NIH, CDC and IDSA professionals. Further some of these Professionals already

have been part of the IDSA guidelines on Lyme Disease, and refused to consider

thousands of scientific documents and the Keynote is Dr Wormser, who has an

extreme bias against chronic Lyme disease and against long term treatment of

Lyme disease.

The panel set up previous to this was the NECM panel. (Some of us who were

involved with that panel and one other I cant remember which one but it was in

1997- learned quickly we were there as a perception to the congressional leaders

and that our input was somehow in agreement with the final document-which was

not the case at all.) , Patient advocates worked to booster input from our

patients (I believe Phyllis was on one of these, as was Lucy ) , and

several LLMDs, however any input was basically thrown out the door, and not

incorporated at all. HOWEVER WHEN THE RESULTST WERE PUBLISHED the input of

physicians who actually treat the patients, and the advocates who work with

patients were not considered or implemented in any way shape or form.

Not even in part….

After the first NEMC hearing, some of you in our state should remember that Lyme

disease treatment became even more difficult. (Those who have been involved in

earlier years know that it was easier to get treated for EM rash, get

retreatment for treatment failures from 1986- about 2003)

I believe that we need to remember this is a supposed to be a lawful process

(formation of the IOM) and the integrity of the process has been severely

compromised, because it is no longer unbiased, just as it happened in the first

NEMC hearings.

While we need to be heard, as advocates we need to be careful not to be USED in

a way for IDSA to continue to infiltrate the IOM, Congress (where we hope to

continue to get support for patients in terms of laws protecting our physicians

who choose ILADS or aggressive standards that fall out of the IDSA guidelines).

To do this, signing the petition will help patients speak that we want an

UNBIASED panel.

Sincerely

Theresa Denham, president

Oregon Lyme Disease Network

a 501(3)C non profit corp.

541-312-3081

lyme@...

www.oregonlyme.org

----forward message---

From: " EmpireStateLyme@... " <EmpireStateLyme@...>

EmpireStateLyme@...

Sent: Fri, September 24, 2010 10:12:47 AM

Subject: Urgent Message to the Lyme Community

Please Distribute to all:

September 23, 2010

Dear Lyme Community:

As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease

workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are

legitimately concerned that the agenda is heavily biased against the patients'

interest. We respect their concerns and their decision to pull out of the

workshop. However, upon careful consideration, we have decided to participate

in the IOM workshop to represent the Lyme patient's perspective and show support

for our presenters. While we have our own reservations, we are working hard to

improve the agenda.

Here are some facts and thoughts to consider in making your own decision:

1)The IOM Lyme workshop is not a forum to debate whose science is right or

wrong. It is, rather, an assessment of the state of the science as presented

from all points of view, for the purpose of determining the science and research

still needed. This workshop is not designed to draw conclusions, but to

determine where future research needs to go.

2)If Lyme patients and Lyme doctors fail to participate, the only perspective

presented will be that of the IDSA. If our Lyme doctors and advocates don't

participate, the committee can't include them in the record and it will appear

in the report as if we don't exist or care.

3)The IOM committee will accept comments for the record up to 3 or 4 days after

the workshop. If you don't know what was said at the workshop, you cannot draw

intelligent comments.

4)Clinicians will have a microphone reserved solely for their use, with extra

time allocated to their questions or comments which will be included in the

final report. Lyme doctor participation is critical or the IDSA clinicians will

be the only ones at the microphone and on record.

5)A Congressman worked hard for the appropriation to fund this project.

Abandoning this workshop is abandoning him, and will compromise his future

ability to argue successfully for Lyme patients in Congress. This Representative

needs Lyme community support at this workshop. We cannot " burn our Congressional

bridges " with the very people who are critical to our cause.

6)When you withdraw from the Washington process, you won't be asked back again.

Each time this happens, we lose our ability to be taken seriously. History

shows that progress is made when we work within the system, not when we abandon

it. Admittedly, it is by nature, a long and arduous process.

Bottom line: the workshop will proceed with or without our community; without

representation we concede to the IDSA. We can't let that happen! If the

situation warrants it, there will be time to write a minority report.

Please attend this workshop and explain your views on the gaps in science and

the research you think is needed. For example, the gaps in diagnosis that

caused your disease to go unrecognized; the lack of uniformity in approaches of

the states; the problem of underreporting; the unreliability of testing and the

other issues you believe should be addressed by the science.

Thank you,

Monte L. Skall

Executive Director, the National Capital Lyme & Tick-Borne Disease Association

Lobes

President, Michigan Lyme Disease Association

Torrey

President, National Tick-Borne Disease Advocates

Judith Weeg

President, Lyme Disease United Coalition

Affiliates:

Lyme Disease Association of Iowa

Minnesota Lymefighter's Advocacy

Nebraska LDUC

Ohio LDUC

South Dakota LDUC

Nevada LDUC

Indiana LDUC

Kansas Lymefighters, Inc.

Oklahoma LDUC

Washington (State) LDUC

North Dakota LDUC

In the Lyme Light, MN LDUC

County Minnesota LDUC

Georgia LDUC

Annondale, MN LDUC

Tracie Schissel

Chairman, Minnesota Lyme Fighter's Advocacy

Vice President, Lyme Disease United Coalition

Tina J.

Founder, Lyme Education Awareness Program

Eva Haughie

President, Empire State Lyme Disease Association