LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » SAMPLE LETTERS TO SEND TO PRESIDENT BUSH

 - UBBFriend: Email this page to someone!    
Author Topic: SAMPLE LETTERS TO SEND TO PRESIDENT BUSH
cjnelson
LymeNet Contributor
Member # 12928

Icon 1 posted      Profile for cjnelson     Send New Private Message       Edit/Delete Post   Reply With Quote 
Below is a sample form letter, a start that can be sent as is with your own information in the spaces needing changing or you can modify it yourself.

I only want to have us show in the #'s needed to get some movement on a National level.

Please pass this on as you wish, send it in via

fax:
20-456-2461

Mail:
The White House
1600 Pennsylvania Ave NW
Washington DC 20500

email

[email protected]

or do as I have and send it all 3 ways!!!!!

I do not pretend to have all the answers nor do I think that this is perfect, alter it as you wish. I only want to supply a start or simple solution for those who cannot do on their own.

So please, dont critize my efforts!!!!! [Big Grin]

cj

quote:
--/--/2007

Dear Mr. President,

I am ------ . I am a fellow Lyme Disease sufferer. I am writing to you today in hopes that you will be the unheard voice that we need, that I need.

I have been sick for ---- years. I was diagnosed --- years ago. I am --- years old. I am (a mother, father, wife, husband). I (am still able to work, unable to work any longer). The road that I have been on has been the most challenging in my life.

As I entered into this new path I have found that there are many issues surrounding this disease that simply do not make sense to me. It appears to be a large political and financial arena that concerns me greatly for in the midst of this battle there are people, families, like mine, and me that are caught in the middle.

The national organizations battling one another, the IDSA, ILDSA, and the CDC, are caught in a mind-boggling arena that makes no sense at all. Because of this continued controversy, the insurance companies take advantage and are able to mainstream their profit potential by denying thousand among thousands of individuals' treatment they so desperately need. I am among them.

Lyme Disease, a spirochete bacterial infection, requires one of the best treatment options for bacteria. Antibiotics. Due to the type of bacteria we are dealing with it normally requires long-term antibiotics. Yet, the controversy continues to mount. No one in the above organizations denies the fact that this therapy is warranted. However, the CDC has written loosely defined diagnostic standards that create loopholes for the medical and insurance organizations. Those loopholes are wreaking havoc in too many lives.

Initially the CDC set these standards as a tracking mechanism. Since these guidelines were introduced, there has been a wealth of knowledge gained in the medical community. However, the guidelines have not been updated leaving even the CDC stating that this disease is highly under diagnosed. If the CDC is aware of this, then their reporting measures and criteria should be reconsidered in order to achieve a more accurate level.

How else can the reality of this disease be addressed as long as the numbers are inaccurately reflected? How can we, as a Nation, expect the medical community to raise their own awareness of the commonality of this disease when these organizations are not being proactive enough to change the exact negating issue they are willing to state exists in writing? They are not implementing any measures to achieve more accuracy! They are merely admitting that their system is flawed and moving forward without action. In doing so, they leave thousands among thousands to fight a system too large under the conditions of which they exist on a daily basis.

The IDSA is a large organization. The ILDSA is much smaller but has a heart ten times the size. The latter may not be completely accurate in their assessments for treatment of this disease either, but at least they are willing to stand up to the status quo and try to help. The IDSA does not have the complete accurate assessment for treatment either; else, there would be NO controversy. Yet, they will not even grant consideration to those willing to step out of the box and demand an alternative for this disease. This makes no sense. It is beyond common sense theories. If Einstein were not willing to alter his methods along the way, there would be no electricity. In all things, change and willingness for change is required for progress.

The Lyme Disease suffers of this country understand, respect and appreciate the difficulty of this disease. We live it every single day. We are not expecting a secret envelope to be opened with all the answers in it. We are hoping for one thing. Willingness for the medical community, the national organizations, the political platforms, to switch gears and join together, as they have with AIDS and CANCER. Nothing more.

By doing so, the CDC would alter their guidelines for more accurate reporting of this disease; eliminating the first hurdle for renewed health and vitality potentials. This would, in turn, demand the medical community awareness to broaden and accept this disease. This momentum would demand the IDSA to open their minds to finding an alternative to combat this disease. Thus allowing the IDSA to consider and work with the ILDSA and potentially come up with a combined alternative that has yet to be discovered.

I imagine the minds, the capacity of these individuals joined together in a conference, with their egos at the door and together, milling over the many possibilities, scientifically approaching the reality of complexity of these spirochetes and one day saying, there it is. The option we have all missed due to the insatiable time we wasted fighting amongst one another.

This will never occur nor be a possibility without the influence of powers much larger than me. It will take a voice of one in power demanding action, change, and implementation of, not just talk. Moreover, you as President of the United States, one afflicted with this disease as well, has the power to do just that.

Please be the voice we need.

Respectfully, in hopes of renewed vitality and health,





--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

Posts: 830 | From TN | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020

Icon 1 posted      Profile for Ann-OH     Send New Private Message       Edit/Delete Post   Reply With Quote 
Looking good, CJ.

Here is my version,

Ann - OH

Dear Mr. President,

Because you,too, had Lyme disease, I am writing to ask you to have your administraton take a close look at what is being done for others who have this infection.

It has been over 30 years since the disease was identified, and we are almost no closer, nationally, to a reliable test, well-defined treatment, physician education, and public awareness than we were in 1975.

There are two bills before Congress (new ones have been proposed every session for years) which are well-considered methods of approaching all the issues defined above, HR-741 and S-1708.

These bills would provide for research to find a reliable test to prove when one has the disease and when it is cured.

Treatment of the disease would be studied and best methods developed to treat this disease which has a myriad of symptoms and progresses differently in almost every patient.

Physicians would be properly educated and would include Lyme disease in a differential diagnosis.

They and the public would be aware of the dangers of tick-bite,would know how to protect hemselves, and what to do if bitten.

The NIH, CDC, and FDA would try to fulfill their mandates and work with the medical community including those who are experienced in treating the disease.

I do hope you are fully recovered and that you will protect yourself and your loved ones by helping to promote awareness of the danger and seriousness of tick-borne diseases.

Most important for you is to know that there is no immunity against Lyme disease. Another tick-bite and you could go through it all again.

Sincerely,


That is my letter, and I offer it to anyone who wants to use it as their own as is or with any additions or editing they see fit.

Ann - OH

--------------------
www.ldbullseye.com

Posts: 5705 | From Ohio | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 14 posted            Edit/Delete Post   Reply With Quote 
cj, good thread and examples.


i think there was an oversight! would you put all THREE NOS. on the FAX no. for president; 2 shown only...thanks.

to edit, click paper/pencil icon to open up thread; correct, and click edit send! thanks!! [Big Grin]

IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
"The ILDSA is much smaller but has a heart ten times the size."

Do you mean ILADS??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95729 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939

Icon 1 posted      Profile for Pocono Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
What ever happened to this?

Public Law 107-116 Signed by President Bush 1/10/02 Departments of Labor, Health, and Human Services, and Education, and Related Agencies Appropriations Act 2002
This is the wording that was passed by the Senate (11/06/01, 12/20/2001) and House (10/11/01, 12/19/01) and included as part of the final bill was signed into Public Law by President George Bush on January 10, 2002.

Centers for Disease Control and Prevention Lyme Disease

The Committee is deeply concerned about the safety of the Lyme disease vaccine (LymeRix). Over 1,000 adverse event reports were filed with the Food and Drug Administration from December 1998 to October 2000. The Committee encourages CDC to work closely with the FDA to ensure that all adverse event reports are thoroughly and expeditiously investigated to ensure public safety as the vaccine is being distributed. Investigators should pay particular attention to patients' reports of arthritis when evaluating these reports.
The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.
The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that `this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing this definition.
The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process. Currently there is just one definition (`confirmed case') of seven possible categories. By developing other categories while leaving the current category intact, the true number of cases being diagnosed and treated will be more accurately counted, lending to improved public health planning for finding solutions to the infection.
The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts
National Institutes of Health - Office of the Director Lyme Disease
The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The Committee encourages the Office of the Director to involve NIAID, NHLBI, NINDS, NEI, NIMH, and NCCAM in promising areas of research. The Committee urges NIH officials to identify appropriate NIH advisory committees for Lyme disease representation and ensure the appointment of qualified persons. The NIH is encouraged to include a broad range of scientific viewpoints in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates.


Social Security Administration
The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1445 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020

Icon 1 posted      Profile for Ann-OH     Send New Private Message       Edit/Delete Post   Reply With Quote 
It was the appropriations bill for that year.

Any wording about any topic can be added to that bill to show the concern of the congress. It doesn't mean that anything was passed or funded.

Very confusing, I know, but nothing came of it because as they say in Washington "It had no teeth."

Ann - OH

--------------------
www.ldbullseye.com

Posts: 5705 | From Ohio | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.