NeuroEndocrineImmune (NEI) Center

PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY – 501 c 3 – ID # 550795076
C/O VIÑA + 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 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 friedman@umdnj.edu
Or Lifelyme Inc., at lifelyme@yahoo.com
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

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.