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» LymeNet Flash » Questions and Discussion » Activism » PANDORA'S 10-22-09 rebuttal clarification letter on NJ autoimmune resolution!

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Author Topic: PANDORA'S 10-22-09 rebuttal clarification letter on NJ autoimmune resolution!
bettyg
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below was broken up into smaller paragraphs for neuro lyme folks like me. betty


An Open Letter to the Lyme Disease Community Stakeholders‏

From: Alex ([email protected])

Sent: Fri 10/23/09 1:53 AM

To: [email protected]
1 attachment
NEI Open ...doc (637.5 KB)


PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY

- 501 c 3 - ID # 550795076

C/O VIA + COMPANY,

255 Alhambra Circle, Suite 715,

Coral Gables, Florida 33134


Phone: 305-441-1591

Volunteer Help line: 954-783-6771 - www.pandoranet.info

Introducing the NeuroEndocrineImmune (NEI) Center

A patient-driven grassroots project of P.A.N.D.O.R.A.
in partnership with
The Lanford Foundation-Lifelyme, Inc.
Science  Innovation  Chronic Illness  Solutions


October 22, 2009

An Open Letter to the Lyme Disease Community Stakeholders


Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center and the Inclusion of Lyme Disease


Dear Friend in the Lyme disease Advocacy Community:


We are reaching out to you because of the recent developments within the Lyme disease advocacy community that are creating much confusion and misunderstanding of what the NEI Center is all about and what our mission is.



We want to clarify false rumors that are being spread via the internet.


The NeuroEndocrineImmune (NEI) Center (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems.



The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared, pathophysiological mechanisms that produce chronic illness in these patients.



For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD).



The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27-28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS.



Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.


The NEI Center is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses.



It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.


The NEI Center is committed to the development of a robust, healthcare community within the State of New Jersey.



We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization.


Representatives of the NEI Center believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent.



The motivation of such a group is suspect.


With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center, we respond:


*The NEI Center (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.


*The NEI Center has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere.

*It is the position of the NEI Center that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9).

*It would obviously be presumptive of the NEI Center to usurp or attempt to alter the work of the World Health Organization.


*The NEI Center, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness.

*Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses.

*When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure.

*Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient's cough or reduce his or her fever.


*The NEI Center believes that many neuroendocrineimmune disorders have complex etiologies.

*Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system.

*Multiple co-infections are now being found in many chronically infected patients.

*To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment), does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.


*The NEI Center maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders.

*Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder.

*However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease.

*The NEI Center and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.


*The NEI Center believes that the inclusion of Lyme disease in the center's mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.


*The concept and mission of the NEI Center is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system.

*The overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.


*The NEI Center, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.


*The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center can only improve the knowledge of and therapeutics for all these illnesses.

*There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.


The inclusion of Lyme disease within the illnesses that the Center will investigate will address and enhance the efforts not only to prevent but possibly to eradicate Lyme disease.



The passage of this resolution is in reality a moral and significant victory not only for the citizens of the great State of New Jersey, who are currently suffering with the devastating consequences of persistent or chronic Lyme Disease, but will also impact the entire country.



The passage of this resolution will be an additional, welcoming lifeline for the Lyme disease patient community.


For far too long healthcare challenges have silenced the voices of many enduring chronic or persistent Lyme Disease, as well as the other illnesses that the Center embraces.



Passage of this resolution in its entirety will certainly enhance and give these individuals a strong voice, allowing them to act as agents for change within their own community, and the opportunity to truly make a difference for others, their families and more importantly for themselves.



To us, the founders of the NEI Center, we strive for these results and we view them as priceless.



In Good Health,


Marly "Marla" C. Silverman


Marly C. Silverman


Founder

P.A.N.D.O.R.A.

www.pandoranet.info


Sandi Lanford

Sandi Lanford

Founder/President


The Lanford Foundation -Lifelyme, Inc.


www.lifelyme.org


You can direct additional questions you may have to either

Dr. Kenneth J. Friedman at [email protected]

Or

Lifelyme Inc., at [email protected]
Sandi Lanford, Founder/President


The Lanford Foundation - Lifelyme, Inc.
Tallahassee, FL
www.lifelyme.org

Disclaimer:
The mission of "THE LANFORD FOUNDATION - LIFELYME, INC., is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related disorders.

Information presented is intended only for educational exchange.

This information is not offered by LIFELYME as medical advice for anyone..

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bettyg
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surprised no one has responded here ... i didn't see this posted elsewhere on the other boards except my post directing folks here.
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022

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I support this new center in NJ along with other lyme groups efforts. I have met the individuals involved and their motivation is pure of heart, inclusive, and not for personal gain or notoriety.

No reason for any to feel threatened, as this will only be another stepping stone to getting lyme research as well as other related problems recognized and funded. This center will only validate individual lyme research causes that already exist, helping to remove the negative stigma created by the medical community who dismiss "chronic lyme".

This research center will bring together researchers from around the world who currently study similar illnesses to share information and study the possible connections and root causes.

We don't need tunnel vision anymore...as we all know this lyme we deal with has individual treatment successes. We all have other things along with the lyme! There is not just one way, or we would all be healed! There is so much more to research and to test.

We need to collaborate as researchers, patients and physicians, by looking at the total picture and be inclusive of complementary therapies. And listen to those who have valid research and treatment success with open minds.

Let's all work together please! Our lives and our future generations are at stake.

Thanks for posting this info Betty!

Posts: 1009 | From NJ | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
pmerv
Frequent Contributor (1K+ posts)
Member # 1504

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An action alert from the national LDA warned patients of the very real dangers
of promoting a project to open a center characterizing chronic fatigue, fibromyalgia,
Gulf War Illness, multiple chemical sensitivity AND chronic Lyme disease as
"neuroendocrine immune" (NEID) disorders. This does not mean that we do not
support research into effective treatments for neuroendocrine/immune symptoms.
We do, and some people with chronic Lyme may benefit from these treatments.

Unfortunately, classifying Lyme with neuroendocrine/immune diseases like irritable
bowel syndrome, Gulf War syndrome, and others dovetails perfectly with the IDSA
effort to classify "chronic" [their quotes, not mine]Lyme disease as a MUS - medically
unexplained symptoms or syndrome. As you probably know, IDSA claims that
there is no evidence that chronic Lyme exists at all!

If you listened to the testimony at the IDSA hearing in Washington DC in July,
you heard Weinstein, Shapiro, and Wormser make their case for reclassifying Lyme
disease. This implies that chronic Lyme disease does not have an infectious
cause, which is false, and justifies refusal to treat with antibiotics, which we
know helps many patients.

So the move towards classifying Lyme broadly as a neuroendocrine/immune disease is
dangerous to people with chronic Lyme disease who depend on antibiotics, but there is
a lot of money in it for researchers if they can include chronic Lyme disease in the mix.
The researchers don't care what happens to YOU, the person with chronic, persistent,
infection with Borrelia burgdorferi, they care about their own careers and their
interesting research into neuroendocrine/immune disorders. That's why they need us.

LDA and affiliates are opposing the inclusion of chronic Lyme in their project to create
neuroendocrine immune centers not because we can't learn something from each other -
we can - but because this will set back our effort to obtain effective antibiotic treatment
for chronic persistent Lyme disease for decades, just as suppression of the evidence
implicating a retrovirus in chronic fatigue set back research into effective treatments for
chronic fatigue for decades. Brorson et al have just published a paper on the effectiveness
of the antibiotic tigecycline, for instance. We need more research like this, not less.

Before you support this project, please consider the
implications of having our disease grouped with the broad class of diseases whose
causes are still unknown. We with chronic Lyme may not have the perfect
treatment, but at least we know our bug and we can work on better treatments. If
this project goes through, say goodbye to long-term antibiotics, all of you who
depend on them now.

As some of you may know, researchers recently announced the discovery of a
retrovirus in chronic fatigue, raising questions about whether this disease as well
should be included in this class of diseases with no known cause.

If you check PubMed for research on Chronic Fatigue, in the past 20 years ALL
the funding has gone towards exploring psychiatric explanations. The virus research
was entirely supported by private money. Read Hillary Johnson's article, below, and
be struck, as I was, by the parallels to Lyme disease. We must avoid giving the research
on chronic Lyme disease even the tiniest nudge in the same direction.

--------------------
Phyllis Mervine
LymeDisease.org

Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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sent phyllis a pm asking her to post the info on hillary johnson she mentioned in her last sentence ... [Smile] at least i'm not the only one forgetful.
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504

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The New York Times

October 21, 2009
Op-Ed Contributor
A Case of Chronic Denial
By HILLARY JOHNSON

EARLIER this month, a study published in the journal Science answered a question
that medical scientists had been asking since 2006, when they learned of a novel
virus found in prostate tumors called xenotropic murine leukemia virus-related
virus, or XMRV: Was it a human infection?

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals
but not known to infect people. In animals, these retroviruses can cause
horrendous neurological problems, immune deficiency, lymphoma and leukemia. The
new study provided overwhelming evidence that XMRV is a human gammaretrovirus --
the third human retrovirus (after H.I.V. and human lymphotropic viruses, which
cause leukemia and lymphoma). Infection is permanent and, yes, it can spread
from person to person (though it is not yet known how the virus is transmitted).

Read the rest at http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1

--------------------
Phyllis Mervine
LymeDisease.org

Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001  |  IP: Logged | Report this post to a Moderator
Sandman
Junior Member
Member # 43220

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Introducing the NeuroEndocrineImmune (NEI) Center™
A patient-driven grassroots project of P.A.N.D.O.R.A. in partnership with
The Lanford Foundation-Lifelyme, Inc.
Science  Innovation  Chronic Illness  Solutions

October 24, 2009
An Open Letter to the Lyme Disease Community Stakeholders

Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center™ and the Inclusion of Lyme Disease

Dear Friend in the Lyme disease Advocacy Community:

We are reaching out to you because of the recent developments within the Lyme disease advocacy community that are creating much confusion and misunderstanding of what the NEI Center is all about and what our mission is. We want to clarify false rumors that are being spread via the internet.

The NeuroEndocrineImmune (NEI) Center™ (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems. The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared, pathophysiological mechanisms that produce chronic illness in these patients. For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD). The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27–28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS. Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.

The NEI Center™ is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses. It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.

The NEI Center™ is committed to the development of a robust, healthcare community within the State of New Jersey. We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments, has the right to engage in such activity without the infringement or opposition of another organization.

Representatives of the NEI Center™ believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent. The motivation of such a group is suspect.

With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center™, we respond:

• The NEI Center™ (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.

• The NEI Center™ has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere. It is the position of the NEI Center™ that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9). It would obviously be presumptive of the NEI Center™ to usurp or attempt to alter the work of the World Health Organization.

• The NEI Center™, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness. Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses. When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure. Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient’s cough or reduce his or her fever.

• The NEI Center™ believes that many neuroendocrineimmune disorders have complex etiologies. Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system. Multiple co-infections are now being found in many chronically infected patients. To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment), does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.

• The NEI Center™ maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders. Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder. However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease. The NEI Center™ and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.

• The NEI Center™ believes that the inclusion of Lyme disease in the center’s mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.

• The concept and mission of the NEI Center™ is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system. The overall concept of the NEI Center’s mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.

• The NEI Center™, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.

• The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center™ can only improve the knowledge of and therapeutics for all these illnesses. There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.

The inclusion of Lyme disease within the illnesses that the Center will investigate will address and enhance the efforts not only to prevent but possibly to eradicate Lyme disease. The passage of this resolution is in reality a moral and significant victory not only for the citizens of the great State of New Jersey, who are currently suffering with the devastating consequences of persistent or chronic Lyme Disease, but will also impact the entire country. The passage of this resolution will be an additional, welcoming lifeline for the Lyme disease patient community.

For far too long healthcare challenges have silenced the voices of many enduring chronic or persistent Lyme Disease, as well as the other illnesses that the Center embraces. Passage of this resolution in its entirety will certainly enhance and give these individuals a strong voice, allowing them to act as agents for change within their own community, and the opportunity to truly make a difference for others, their families and more importantly for themselves. To us, the founders of the NEI Center™, we strive for these results and we view them as priceless.
In Good Health,

Sandi Lanford
Sandi Lanford
Founder & President, The Lanford Foundation – Lifelyme, Inc.
Director at Large – P.A.N.D.O.R.A.
www.lifelyme.org
Marly “Marla” C. Silverman
Marly C. Silverman
Founder, P.A.N.D.O.R.A.
www.pandoranet.info
You can direct additional questions you may have to either
Dr. Kenneth J. Friedman at [email protected]
Or Lifelyme Inc., at [email protected]
The Lanford Foundation – Lifelyme, Inc.
Tallahassee, FL
www.lifelyme.org

Disclaimer:
The mission of “THE LANFORD FOUNDATION – LIFELYME, INC., is to provide educational information for anyone interested in tick-borne diseases, chronic infectious, systemic diseases and related disorders. Information presented is intended only for educational exchange. This information is not offered by LIFELYME as medical advice for anyone.


Sandi Lanford, Founder/President
The Lanford Foundation – Lifelyme, Inc.
Tallahassee, FL
www.lifelyme.org

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