P.A.N.D.O.R.A. NeuroEndocrineImmune (NEI) Center Resolution Approved by the New Jersey State Senate

Coral Gables, FL, July 17, 2010 –(PR.com)– Resolution SR-20 supporting the establishment of the NeuroEndocrineImmune (NEI) Center™, the first research center in the state of New Jersey and in the U.S., dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, Gulf War Illness and other bacterial & viral infections chronic illnesses was passed unanimously by 38-0 votes by the New Jersey State Senate on June 10, 2010.

Senate Resolution (SR) 20, sponsored by Senator Christopher “Kip” Bateman (R), Senate Deputy Conference Leader, and Senator Loretta Weinberg (D), Chair of the Senate Health Committee, cited studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all the health care costs in the U.S.

“It makes sense to locate the NEI center in New Jersey,” said Senator Weinberg. “As the nation’s medicine chest, New Jersey is home to research institutions and private businesses that can cooperate to find a cure for these debilitating diseases.”

Senator Bateman added, “I look forward to the passage of Senate Resolution 20, solidifying legislative support for the research center, and have high hopes that this will, in fact, be a great step forward toward finding answers for the sufferers of these debilitating diseases.”

Assembly Resolution 202 passes unanimously

Late last year, a similar resolution unanimously passed the New Jersey State Assembly 78-0. “Having a research center… is essential to promoting research into the etiology of, and therapeutic interventions for neuroendocrineimmune disorders (NEIDs),” according to Assembly Resolution (AR) 202 which was sponsored by Assemblyman Upendra Chivukula (D), Deputy Speaker; Assemblyman Herb Conaway, Jr. (D), Chairman, Health Committee; Assemblywoman Connie Wagner (D), Vice-Chairman; and Assemblywoman Mary Pat Angelini (R), member of the Health Committee

P.A.N.D.O.R.A. partners with the Lanford Foundation-Lifelyme™, Inc.

To be based in Newark, New Jersey, the NeuroEndocrineImmune (NEI) Center™ is a community patient-driven project of P.A.N.D.O.R.A, (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc) in partnership with the Lanford Foundation-Lifelyme™, Inc.

The NEI Center™ is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center™ is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body’s response to similarities in the underlying pathophysiologies that cause these disorders.

The cornerstone of the NEI Center’s mission is that discoveries and advances made in any one of the NEIDs will be applicable and beneficial to other NEIDs, thereby bringing medical researchers closer to a cure. At its inception, the NEI Center™ will include research of the following disorders/illnesses:

Chronic fatigue syndrome (CFS), fibromyalgia (FM), Gulf War syndrome or illness (GWS/I), multiple chemical sensitivity (MCS), and other associated bacterial and viral illnesses.

“Moral and political victory,” said Marly Silverman, a CFS and fibromyalgia patient who founded P.A.N.D.O.R.A. in July 1, 2002, “On behalf of P.A.N.D.O.R.A., we are mindful of the historical significance of the unanimous vote by the New Jersey Senate as well as by the New Jersey Assembly in 2009. Patients across this country will be celebrating what is an amazing and pivotal moment in the history of the neuroendocrineimmune disorders community. The New Jersey Legislature has demonstrated a caring commitment to a community of patients who for the first time in the state of New Jersey can look forward to a brighter and fruitful future.”

Veny W. Musum, chairman of the NEI Center Project, who was diagnosed with chronic Lyme disease in 2004 along with his wife, Patricia, added, “The passage of SR 20 is a moral and political victory for millions of individuals stricken with neuroendocrineimmune disorders who have been living far too long without the compassionate support, research and treatment options they deserve. I am proud of my state of New Jersey!”

Advocates Extraordinaire™ & community support

“The overall community support has been outstanding for this patient-driven, physician-approved project. The unanimous votes by each New Jersey senator came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey Legislature for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

“The New Jersey legislators unanimous support for the NEI Center reflects the kind of leadership needed to bring about positive change in our nation’s Health Care,” said Sandi Lanford, Co-founder of the NEI Center™ and the President-Founder of the Lanford Foundation-Lifelyme™, Inc, who was born and raised in New Jersey. The overall community support has been outstanding for this patient-driven, physician- approved project. The unanimous votes by the New Jersey Legislature came about because of the involvement of individuals who participated in the Advocate Extraordinaire™ program, by making calls, writing e-mails and thanking the New Jersey legislators for their vision and support of the Center,” said Dr. Kenneth Friedman, one of the founding board trustees of the NEI Center, as well as former member of the CFS Advisory Committee, and a member of the Executive Board of P.A.N.D.O.R.A.

Dr. Lesley Fein, member of the NEI Center Project team, stated “This center will be a beacon of hope for patients nationwide, and a place which will bring scientific innovation in New Jersey as well as in the rest of the country.”

Present at the passage of the law were Veny Musum, Chairman of the NEI Center Project and Debbie Floyd, team member of the NEI Center™ project.

NEI Center set to open by 2012

The NEI Center founders are already preparing fundraising efforts to make the Center operational by late 2011-early 2012. For more information about The NEI Center™, visit www.neicenter.com.

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About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy – Based in Coral Gables, Florida, P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities/EI, and Gulf War illness, and advocate on quality of life issues. P.A.N.D.O.R.A.is Built on Hope – Strong on Advocacy – Finding a Cure through Research. For more information, visit www.pandoranet.info.

Chronic Fatigue Syndrome a medically determinable impairment

One of the battles often fought by persons with CFS trying to obtain Social Security Disability Insurance and SSI benefits was resolved with the adoption of Social Security Ruling 99-2p. In this binding Ruling the Social Security Administration set out guidelines for adjudicators and judges to follow for claims based upon Chronic Fatigue Syndrome. This Ruling removes at least one of the barriers faced by Claimants.

What Was the Issue?

The Social Security Act allows for SSDI or SSI benefits to be paid to persons unable to work by reason of any medically determinable physical or mental impairment (or combination of impairments)….” (emphasis added) The Act and Regulations define the phrase “medically determinable” as a condition that can be established by medical evidence consisting of signs, symptoms and laboratory findings. It cannot be based only on the Claimant’s description of symptoms.

In claims based upon CFS there are obviously a lack of medical signs, symptoms and laboratory findings. Therefore many claims were denied on the failure to prove the existence of a “medically determinable impairment.”

What Does the Ruling Say?

The Ruling states unequivocally that CFS can be a medically determinable impairment. It specifies medical signs and laboratory findings that will now constitute proof of a medically determinable impairment for persons suffering from CFS. However, whether the Claimant is actually “totally disabled” is a separate determination based upon the severity of functional limitations caused by the disease. That is the same as in any claim based upon any other medical problem.

This Ruling requires that any of the following medical signs, which are clinically documented over a period of at least 6 consecutive months, can establish a medically determinable impairment:

• palpably swollen or tender lymph nodes on physical examination;
• nonexudative pharyngitis;
• persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points; or,
• other medical signs consistent with medically accepted clinical practice which are consistent with the other evidence in the case record.

The following laboratory findings can establish a medically determinable impairment for individuals with CFS:

• an elevated antibody titer to Epstein-Barr virus capsid antigen equal to or greater than 1:5120, or early antigen equal to or great than 1:640;
• an abnormal MRI brain scan;
• neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or,
• other laboratory findings consistent with medically accepted clinical practice such as abnormal sleep studies and abnormal exercise stress tests that are consistent with other evidence in the case record.

Finally, mental impairments documented by mental status examinations or psychological testing can also establish the presence of a medically determinable impairment.

What Evidence Can Be Used to Show these Signs and Findings?

As in any claim for disability benefits the focus is upon the medical evidence, especially the clinical records and test results from treating sources. SSA will try to obtain all medical records, generally beginning 12-months prior to the month of application. The Ruling notes that conflicts in the medical evidence are not unusual in cases involving CFS and clarification should be sought first from the treating sources. Treating source opinions about the severity of the impairment should be given deference if they are well supported by medically acceptable clinical and laboratory techniques and are not inconsistent with other evidence in the records. It is noted that any information regarding functional abilities before and after the onset of the impairment is helpful in evaluating the claim. Finally third-party sources may be useful in determining the credibility of the Claimant.

As in any claim, the focus is upon a longitudinal view of all of the medical evidence. Claimants must be actively treating with medical providers and must be completely describing all symptoms each time they see the doctor. The doctors must keep careful, legible, notes during each visit so that the signs and findings noted above can be documented. In addition, the physician should be willing to provide a written opinion to SSA regarding the patient’s ability to sustain even sedentary work activity on an 8 hour per day, 5 days per week basis.

SSR 99-2p does not provide that every claim based upon CFS should be approved. It does, however, set forth guidelines for evaluation of these claims so that Claimants, physicians and representatives can be assured of a fair evaluation of the impairment and its impact on the individual.

Literature: Jeffrey A. Rabin & Assoc, CFS Finally Recognized As ‘Medical Impairment’ Under Guidelines, 24-7, June 26, 2010

Article provided by Jeffrey A. Rabin & Assoc, Visit at www.rabinsslaw.com

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Related Articles:

• CFS – Chronic Fatique Syndrome: FDA and NIH confirm ‘XMRV findings’
• MCS – Multiple Chemical Sensitivity recognized as physical disease at ICD-10 in Japan
• The Department of Health of the Austrian Government recognizes MCS – Multiple Chemical Sensitivity as a physical disease
• MCS recognized as physical disease in Germany

The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.

In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.

On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on ‘Surveillance and screening of Blood Borne Pathogens’ in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.

The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”, was one comment on the XMRV findings reported by Alter in Zagreb. “Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%-7%. We (FDA & NIH) have independently confirmed the Lombardi group findings.”

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

Literature:

ORTHO, Dutch magazine for health professionals, FDA and NIH confirm ‘XMRV findings’, Gendringen, NL (MMD Newswire) June 22, 2010.

WE KNOW THEY ARE LYING TO US

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(ANTI-TOXIC MANIFESTO)

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They are lying to us. We know they are lying.

For the politicians, we are the black sheep in their controlled herd.

For the doctors who lie to us, we are the misbehaved guinea-pigs.

For the industry that lies to us, we are the non-profitable broken machines.

For the pharmaceutical companies, we are the pebble in their shoe.

The disease mongers lie to us.

Those who talk of progress with one hand on their wallet, lie to us.

But we do not believe their toxic lies.

Although they want to make us invisible, lock us up in an illness and throw away the key, poison us and shut our mouths, kill us and then plant fake flowers on our tombs, they will not be able to lock us up, shut us up, nor make us disappear.

We are out of patience and we are not good patients. We do not justify ourselves nor do we explain ourselves.

If you suffer with Fibromyalgia, survive with ME/Chronic Fatigue Syndrome, if you are agonizing with Multiple Chemical Sensitivity, you should know that you are at war. Their lies do not scare us, they are the ammunition in this war that has merely started.

If you believe that you are healthy, choose your side: get sick with them or live with us.

Now is our moment: we name, we decide, we define.

We do not believe their toxic lies.

We know they are lying.

Clara Valverde & Eva Caballé, No Fun

CSN – Chemical Sensitivity Network supports this manifesto.

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May 12, 2010 – International Day of Fibromyalgia, ME/CFS and MCS

International Appeal from Wuerzburg

The European Academy for Environmental Medicine (EUROPAEM) invited many renowned national and international scientists and health care professionals to a medical conference held in Wuerzburg, Germany from April 23 to April 25, 2010. These professionals were from the fields of environmental medicine, toxicology, immunology, neurology and genetics and other health fields as well as physicians and dentist. Also in attendance were representatives of patient initiatives. The theme of this international medical conference was Science Meets Practice. It dealt specifically with the issues of Neuro- Endocrine- Immunology and their importance in environmental medicine.

Greatly concerned, participants noted the increasing prevalence of chronic multisystem illnesses such as multiple chemical sensitivity (MCS), chronic fatigue syndrome (CSF), fibromyalgia (FMS) as well as cardiovascular diseases, metabolic syndrome, neurodegenerative diseases, auto immune diseases, and cancer.

At the conference it was impressively demonstrated that these chronic diseases are based on similar pathological mechanisms. Common mechanisms are chronic inflammatory processes influenced by environmental factors including chemical pollutants, biological infectious agents, and electromagnetic field (EMF) triggers.

Chronic diseases mean long-term patients and such patients require consecutive higher medical costs. This often leads to social exclusion of the affected people. Facing the appalling reports of Europe´s growing financial constraints, especially in public health, a further increase of chronic illnesses will accelerate the ongoing collapse of the National Health Service and medical insurance companies in Europe. Remedy is only possible with a change of priorities from today´s unilaterally symptomatic oriented medicine to causally oriented medicine focusing on cost-effective primary prevention.

Conference participants addressed an urgent appeal to the European environment and health ministers, to the European Commission, the European parliamentarians, national governments and to the directors of social and private insurance companies. They urge them to take these findings and developments into serious consideration, stressing and weighting financial investments primarily in prevention, precaution and best early detection and diagnosis of these chronic and environmentally related illnesses.

All over Europe this requires the full awareness of these research findings of the practicing physicians of environmental medicine and their integration into university research and teaching. The European governments are asked to finally implement the already ratified decisions of the Fourth Ministerial Conference on Environment and Health Ministers held in Budapest in 2004.

This appeal was unanimously adopted by the congress.

Wuerzburg April 25, 2010

For the board of EUROPAEM,

Jean Huss, Vice-Chairman

Dr. Kurt Mueller, Chairman

Dr. Peter Ohnsorge, Managing Chairman

Dr. Hans-Peter Donate, Press, Responsible

• German Version – International Appeal from Wuerzburg
• Japanese Version – International Appeal from Wuerzburg / Thanks to Takeshi for translation.