#112~ "If this was HIV, it would be 1983"

For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost  it for everyone to read.. cuz this needs to be known.. 

I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created. 


The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???


And Now~ Here's Judy ♥ 
from the NIH State of Knowledge April 8th, 2011
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Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.

But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.

I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all. 
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Thank You Patricia Carter of the  http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
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If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while 

"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness"  ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.


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#72~ Annette Whittemore's article ♥ "I Hope YOU Dance"

This article appeared in Molecular Interventions June 2010. Annette tells it "like it is" and maybe some more people will realize that this issue NEEDS some REAL attention by MANY and just HOW HARD this wonderful institute, of which she is the President/CEO, is working and just how much THEY DESERVE your Support.

Their Big Yearly Fund Raiser Gala "I Hope You Dance"
is coming up in Sept.... so Please "Reserve the Date", book your Reservations NOW, and get as MANY people to come as you can. They will also be having a Silent Auction of some incredible things and beautiful donated art.

              
                 6th Annual WPI Fundraising Gala

                "I Hope You Dance"- Sept.10, 2010              Peppermill Resort Casino, Reno, Nevada
             1-800-282-2444 -  Event ID # WPI 10
For details 775-321-5974 or email kporath@wpinstitute.org

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The Whittemore Peterson Institute

Building the bridges through private and public sector collaboration

Annette Whittemore

The Whittemore Peterson Institute’s (WPI) publication of its ground-breaking study on October 8, 2009, of the link between a cancer-related retrovirus, XMRV, and patients with myalgic encephalomyelitis/chronic fatigue syndrome (“ME/CFS”) brings a desperately needed legitimacy to a complex yet controversial and misunderstood disease (1). News of this significant association brought hope to millions around the world who have suffered in silence from its devastating effects. Perhaps, just as important, the discovery of XMRV infection in humans allows the medical world to construct a testable hypothesis of how XMRV may cause or contribute to illnesses across a wide spectrum of chronic inflammatory diseases and cancers and new paradigms of treatment and perhaps prevention.

That the discovery happened in just three years of a small research institute’s existence is almost as amazing as the extraordinary scientific work. This is the story of how and why the Whittemore Peterson Institute came to be. It is a story of multiple collaborations at every level, revealing a blueprint for other groups of dedicated scientists, doctors, and philanthropists to create greater progress through unique and selfless partnerships across nontraditional boundaries. Like other philanthropic endeavors, it began as an idea evidenced through personal suffering and acted upon after all other avenues had failed.

The personal decision to commit time and money to build an institute for patients with neuroimmune diseases came from a desperate need for medical solutions to a disease that had been destroying our daughter’s life for over twenty years. We were also faced with the reality that experienced physicians were retiring without passing on their knowledge of ME/CFS to new physicians . In addition, the existing medical establishment lacked both knowledge and medical tools to effectively treat patients who suffered the debilitating effects of this neurological disease. Around the world, those who suffer with ME/CFS have been told that their physical disorder is a manifestation of a psychiatric disease. Subsequently, these patients may then be denied medical support by their government-run health care programs.

Box 1. 
The Historical Description of Myalgic Encephalomyelitis Myalgic Encephalomyelitis was first described by Melvin Ramsey in the UK after an outbreak in the 1950s [(5–7), see also (8)]. He coined the term to describe the muscle pain and symptoms of brain and spinal-cord inflammation its sufferers experienced. In the early 1980s, an outbreak in the United States of a disease with the identical symptoms of ME was reported to the CDC. With little input from the physicians who first described the disease, a small group of scientists, doctors and psychiatrists renamed the disease from the earlier term, chronic Epstein-Barr virus, to simply “Chronic Fatigue Syndrome” (9). By emphasizing fatigue as a symptom, which is known to be associated with many chronic conditions, those with “CFS” quickly became confused with others who were simply “tired” or “burned out” from overwork. Unfortunately for those who were truly ill, and not merely tired, this misunderstanding has prejudiced scientists and doctors before they ever examined a patient with “CFS.”

Journey Through A Medical Wilderness
 
Our odyssey began in 1989, when my daughter, Andrea, became ill with a mononucleosis-like illness and then failed to return to normal health After many months of continuous relapsing and remitting flu-like symptoms, she was referred to a major medical institution for evaluation. She was given a cursory check up, then provided with a psychological explanation for her infectious symptoms of sore throat, severe head and nerve pain, swollen lymph glands, night sweats, tachycardia, and muscle aching fatigue. Even to a non-scientist that answer seemed ridiculous. The consulting physicians could offer no explanation for what was clearly a biological phenomenon.

I returned home with Andrea, determined to find a doctor who knew something about the outbreak of a disease that had occurred at Lake Tahoe, a favorite summer destination frequented by our family. A physician and next door neighbor, Reggie Davis, who had known Andrea as a healthy child and saw her frequently during her illness, was convinced that her symptoms were like those of individuals from that outbreak. He suggested that we see Raymond Scott, an internist in Reno, even though Andrea was only twelve. Before allowing her to see the doctor, I scheduled an interview with him to be sure he knew something about the disease: I was not going to allow her to be told that her symptoms were not real, as did the doctor who told her that she “most likely hated her parents, her friends, and her school.” Through it all, other physicians confirmed what I knew––that my daughter was ill with a very real disease. Fortunately, Dr. Scott had worked with other patients in the Incline Village, Lake Tahoe area and knew more about CFS than any other doctor in Reno. Although the treatments he offered provided only symptomatic relief, her life improved under his compassionate care. She continued this modest improvement until she decided to enroll at the University of Nevada–Reno. The admission policy required the measles, mumps, and rubella (MMR) vaccination prior to starting classes. Within five days of the MMR vaccination, Andrea had a severe relapse and never regained her previous level of health.

Reflections

As her health continued to deteriorate, Dr. Scott became more concerned. Soon we were on our way to another major medical institution in California, where rounds of tests and several physicians later, we ended the visit with a referral to another hospital’s pain clinic where she was told she should fill out a questionnaire everyday, then learn to live with her pain. Just eighteen years old, Andrea was facing a lifetime of pain that was so severe she required the use of a transcutaneous electrical nerve stimulation unit and injections to make it through the day.

Only after a visit to a local gastroenterologist, one year later, did we find that much of her pain arose from a diseased gallbladder. Within six months of her gallbladder surgery, she also had to have her appendix removed. We began to worry that a vital organ might soon be affected, so we followed her doctor’s advice and sought out internist Daniel Peterson of Incline Village. Months later, Andrea was accepted into his practice

Dr. Peterson has a passion for his work and his patients. He is one of a small number of well-respected CFS physicians and was one of two doctors who first alerted the Centers for Disease Control to a possible outbreak of a new disease, then dubbed chronic Epstein-Barr virus (EBV) (2). Dr. Peterson knew that something was making his patients sick and keeping them from getting well again. The CDC’s quick reply left Peterson with the impression that the CDC didn’t know what the cause was and that it did not think it warranted more attention. Without serious government-backed follow-up to validate those initial and unfortunate faulty conclusions, medical scientists were dissuaded from researching the cause of the new disease, while many more around the world became ill.

Patients who had what was now known as ME/CFS were left with modest victories to cheer and little medical hope. In 1993, Nevada became one of the first states to request that the President and Congress increase funding for research into CFS4. In addition, the Nevada legislature agreed to include the drug, Ampligen, which acts to stimulate the body’s antiviral defenses, in modest recovery models for Phase III trials. Treadmill VO2max (i.e., the volume of oxygen utilized during exercise of maximum exertion) was used as a guide to evaluate patient disability and response to treatment. When Andrea turned twenty-one, she enrolled in the phase III drug trial. Twice a week she was given an intravenous (iv) infusion that at first caused her to experience a worsening of her symptoms. Other days, she spent hours receiving nutrient iv fluids that supported her health. Finally, after one year of treatment, she began to improve with the drug and continued to take it, off and on, for eight years. Blood tests, developed in a laboratory in Belgium, helped determine some of the unique traits found in many CFS patients. After the bombing of the World Trade Center, however, transporting blood overseas was no longer an option. We and a few other patient advocates were approached by one of the owners of the Belgium lab and asked to support the establishment of a US lab that would perform the same tests. Because most of the American patients lacked the insurance to pay for the tests, my husband, Harvey, and I agreed to help and soon supported the lab in its entirety. We felt supporting this lab was critical to the ongoing work in developing and testing therapies for patients with CFS. As a result of supporting the lab, valuable RNase L studies and natural killer (NK) cell work were able to continue, which eventually led to the hypothesis that patients with CFS might be infected with xenotropic murine leukemia virus-related virus (XMRV). While taking Ampligen, Andrea improved to 75% of her previous levels of energy and stamina, but despite many of the positive outcomes, she continued to fall ill with opportunistic infections. For unknown reasons, Andrea began to develop reactions to Ampligen, making her too sick to continue. Once off the drug, she began a continuous decline. Today, without treatment she experiences daily seizures, nausea, vomiting, severe allergies, and painful lymph-node swelling. As a result, she requires nearly full-time help to care for herself and her home. Instead of answers and solutions, we were left with hopelessness.

CFS: Challenges To Overcome

The difference between the actual effects of this disease and that which is portrayed in the popular media could not be greater. The current CDC definition states that a patient must satisfy two criteria:

1. Have severe chronic fatigue of six months or longer duration, with other known medical conditions excluded by clinical diagnosis; and

2. Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than twenty-four hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue. The CDC then recommends a series of common blood tests, but goes on to predict that:

“More than 90% of patients presenting with severe fatigue will test at normal levels for the series of laboratory tests listed above. Assuming that there is nothing in the physical examination or in the personal history of the patient that suggests a clear direction to the doctor, no further laboratory testing is recommended.”

With what other disease could government health officials suggest waiting six months for a diagnosis, using tests that will only tell you what it is not, and leave you with no answers as to what it is or how to treat it? The CDC concludes that because not every CFS patient has the same abnormalities in their immune systems or brain scans, further evaluation is not necessary. Thus, scientific answers become even harder to obtain.

Perhaps what is missing most from the public’s awareness is the description of the most severely ill patients, like Andrea, who, at times, was so ill and weak that she was unable to feed herself or walk unaided. As these patients’ immune systems weaken and various chronic infections take hold, they live their lives between doctor’s offices and their homes physically and emotionally isolated from their families, friends, and communities. Many go on to develop life-threatening complications. In a retrospective analysis, Leonard Jason found that those diagnosed with ME/CFS died of heart disease, cancer, or suicide at ages approximately twenty-five years younger than the normal population. Only detailed epidemiological studies will reveal the true complications of long term disease and mortality resulting from the complications of this disease.

The problems that patients experience when dealing with the healthcare system can be as difficult as the disease itself. Most doctors have difficulty diagnosing ME/CFS and when they do, are at a loss as to what to do for their patients. The lack of medical consensus is so great that most doctors disagree on the best treatment strategies or what, if any, biological treatments to consider. Doctors and patients are left to their own devices, experimenting with drug treatments that are unproven, toxic, or both. Scientific and educational information surrounding ME/CFS is conflicting and often consists of anecdotal observations from physicians. Additionally, many patients are told they suffer from “faulty thinking” about the illness and are then prescribed cognitive behavioral therapy and graded exercise therapy.

More Than A Foundation

It was evident to me, after working with another research foundation to study CFS, that engaging various scientists to do related research projects was only one part of the solution to the much bigger issues surrounding ME/CFS. This initial research program was narrowly focused on one virus and relied on individual researchers to apply for grants. Much like the extramural grants of the NIH, these projects are scattered among different unrelated researchers and not organized in a comprehensive and coordinated manner.

One thing that I admired about the foundation’s director was her ability to access researchers to do the work that she felt might reveal new information. After reading about the XMRV finding in prostate cancer, I tried to contact the group of researchers at UCSF that had made the extraordinary new discovery. I wanted to pay them to test CFS patient samples using their viral-chip technology. After several attempts, I gave up that effort and instead began to develop another plan of action. That plan was to create a research program within the structure of a medical research center.

Many advocacy organizations had expressed an interest in government support of Centers of Excellence for the treatment of patients with ME/CFS. In fact, to address the issues of CFS, a bench-to-bedside approach was needed, requiring nothing less than an expert institution, which would combine translational research with patient diagnostics, treatments, and medical training for new doctors. When it became apparent that no one else was willing to create such a center, with the strong encouragement of my husband, family, friends, and political leaders.

Reflections

I agreed to act. With a promise from medical doctors to support our efforts, I committed my time and my family’s resources to create and build such an institute. In early 2005, Dr. Peterson and I began working to describe this institute’s future clinical practice. Meanwhile, my husband discussed with John Lilley, then president of the University of Nevada–Reno, the School of Medicine’s desire for a new medical research building. Our Governor and good friend, Kenny Guinn, agreed to place this project in his state budget. Legislative leaders who understood the potential benefits to both patients and future medical education in this state also began to offer their support. This new research facility was to house three significant interest groups: researchers from the University of Nevada’s Medical School; the Nevada Cancer Institute; and the Center for Neuroimmune Disease (now called the WPI). That winter, I gathered scientific information for a presentation to the 2005 state legislature, arguing the need for such a medical center. University representatives and Nevada Cancer Institute scientists did the same. Passionate pleas were made by several patient advocates in addition to our testimony. By the end of the legislative session, ten million dollars has been allocated to support a new research and medical office building5 (Figure 2). The main portion of the building was built from bond money which was based on the indirect costs of the researchers’ grants. My husband and I committed to give or raise an additional $5 million towards WPI’s portion of the building, and soon the construction began, bringing reality to a dream.

The Real Work Begins

Judy Mikovits and I met at an HHV-6 Foundation conference in the spring of 2006. It was at that conference that Dr. Peterson presented patient data describing many longstanding CFS patients who had developed rare lymphomas. Dr. Mikovits was intrigued and, as a seasoned scientist with experiences in retrovirology, recognized a potential for discovering a new disease causing pathogen. Shortly thereafter, I asked Dr. Mikovits to serve as the Institute’s full-time Research Director. She immediately planned a comprehensive research program to answer questions that would support the development of diagnostics to help define those who had this illness. She began by building a repository of patient samples and organizing her studies to generate sufficient data to justify an NIH grant, which was submitted in June, 2007 and finally funded in October, 2009.

Having the support of University leadership––President Milton Glick and Ole Theinhaus, Dean of the Medical School––was also critical to our success. Experienced scientists such as Steven St. Jeor, a CMV researcher; Greg Pari, an expert in Kaposi’s sarcoma-associated herpesvirus (KSHV); and Ian Buxton, a pharmacologist, offered their assistance. Soon after moving to the University, we organized a small conference as a means to formally introduce ourselves. Researchers from the University, the National Cancer Institute, and the WPI came together with ME/CFS physicians, to discuss their areas of expertise. The following year Dr. Mikovits led the first meeting of the Institute’s new scientific advisory board. Today, the WPI Scientific Advisory Board engages scientists with expertise in cancer, infectious disease, autoimmune diseases, immunology, and virology.

WPI has had to use a combination of funding mechanisms to pay for the many different activities neccessary for the creation of a working institute. Like many medical research non-profits, WPI must rely on the talents of its researchers to receive grant support and the ability of its administrators to raise funds from the larger community. When a disease is not well understood and often maligned, it is an even more daunting task. For example, it took WPI three years to receive NIH funding for reasons unrelated to the quality of the proposal.

Donations to the Institute come in many forms. WPI has a yearly gala dinner which raises hundreds of thousands of dollars. We ask private foundations, companies, and individuals for their help in a variety of ways. We have also used yearend gift appeals and a new Facebook Cause page to raise money and awareness. The WPI Web site has been a source of donations, as well. The urgent need for a continuous source of income to support the clinical work of the Institute is now our greatest priority. Generous patients, hopeful for answers, make up a significant part of the funding in this disease. They must choose between several organizations who claim to be doing important research work. It is difficult for most laymen to decipher the kind of science they are funding or whether or not the scientists are qualified to do the work. Thus, private donations which are very competitive can be spent on research that does not provide significant results. Educating the public about the importance of our organization’s own research capabilities is time consuming and requires a full time effort, but is extremely necessary if one is to gain public support.

The Intramural NCI Program:
The Value Of Basic Research

The selection of Dr. Mikovits as the research director of the WPI was fortuitous in that she had worked for twenty years in the Intramural Program for the NCI as research technician, graduate student, postdoctoral fellow and finally as head of the NCI contractor’s lab of Antiviral Drug Mechanisms. The NCI’s tumor virus program of the late 1970s supported the identification of retroviral oncogenes in human tissue and of the tumor-causing human retrovirus, human T cell leukemialymphoma virus type I (HTLV-I) by Bernie Poiesz and Frank Ruscetti, in the laboratory of Bob Gallo. By 1984, NCI investigators were co-discoverers of a new retrovirus, HIV-1, which is the causative agent of AIDS. It was natural for Dr. Mikovits to enlist the help of her former NCI colleagues, Frank and Sandy Ruscetti, Mike Dean and Rachel Bagni, to look for an infectious agent. Thus, NCI’s investment in funding basic research in animal and human virology made the discovery process possible. Initially, the discovery process focused on the use of a viruschip assay similar to the one used to discover xenotropic murine leukemia virus-related virus (XMRV) in the tissue of men carrying RNase L mutations who had prostate cancer (4). After two and a half years of trying to make sense of the viral chip data, we narrowed our focus to XMRV, because many CFS patients also suffer from an RNase L defect, and initiated a collaboration with Bob Silverman, a co-discoverer of the virus, of the Cleveland Clinic. All patient material used in this study were subjected to four separate XMRV assays: DNA PCR from peripheral blood cells (PBMC); viral protein expression in PBMC; presence of antibodies in plasma; and the recovery of infectious virus from plasma transmitted to indicator permissive cell lines. After five months of a rigorous review process, the journal Science published our findings (1).

The Aftermath: 
Still Stuck In Osler’s Web

By attempting to bring chronic fatigue syndrome (CFS research out of the shadows and squarely onto the nation’s health agenda, we knew that we would be the object of much criticism from both the medical establishment and those individuals invested in other theories of disease causation. Previous experiences had shown that some of these activities would parallel what happened during the early days after the discovery of HIV and AIDS.

CFS was belatedly recognized as a legitimate disease entity by the Centers for Disease Control in 1997 but is still denied recognition as an infectious immune disorder. The HHV6 foundation believes that HHV6 is the sole cause of CFS. A major CFS patient advocacy organization is on record, having concluded that a retrovirus has nothing to do with the pathophysiology of CFS. Much of the opposition outside of the CFS community firmly believes this disease and others that are similar arise from psychiatric disturbances. Within a week of the Science online publication, several scientists publicly announced that they would not be able to replicate the findings, negative findings were reported on blogs, and within a month, three negative papers had been written and submitted about the lack of XMRV in CFS.

Without directed research allocations from a Director of an NIH institute, it can take between three to five years before money can be allocated to study the role of XMRV in disease. Fortunately, Robert Wiltrout, Director of the National Cancer Institute’s Intramural Center for Cancer Research, has already requested that the scientists in the intramural program begin to develop reagents to determine the role of XMRV in the development of cancer and other chronic diseases. The other difficulties surrounding funding of governmental research grants are numerous, including the time it takes for the entire process to be completed. NCI has developed a mechanism to rapidly give new research funding to existing cancer centers. Unfortunately, when a new, non-traditional entity such as the WPI is created, it must often delay work until the funding is already in place. To solve these problems, we have found it beneficial to work with other institutions and experienced investigators who have offered to co-author grants in a mentoring relationship. But we have also learned a valuable lesson: a non-traditional entity may point out a new research direction, but it must be confirmed by traditional engrained mechanisms.

Reflections

Although the challenges have been significant, the personal rewards one receives by helping others through the work of this institute have been tremendous. We meet and talk often with hundreds of individuals who are thankful that the WPI is creating a scientific program of discovery that will improve their lives. They have spent too many years suffering in silence, often opting out of the medical world when they can’t find relief. Scientific efforts to solve the many questions surrounding neuroimmune diseases have brought a renewed interest in the field and hope to millions throughout the world. Below are just two of thousands of messages sent to our offices. “Canada cheered when we heard the news.” Another patient wrote, “I do not have words to thank you for the work you have done. It has now been 30 years since I fell ill and I truly never thought I would see the day this terrible knot was untied.” Therein lies the motivation, despite all obstacles, to continue this vital mission.
 
References
1. Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, et al. (2009) Detection of an infectious retrovirus, XMRV, in blood cells of patients with Chronic Fatigue Syndrome. Science 326:585-589.
2. Holmes GP, Kaplan JE, Stewart JA, Hunt B, Pinsky PF, and Schonberger LB (1987) A cluster of patients with a chronic mononucleosis-like syndrome. JAMA 257:2297–2302.
3. Jason LA, Corradi K, Gress S, Williams S, and Torres-Harding S (2006) Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 27:615–626.
4. Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant. PLoS Pathogens 2:e25.
5. Ramsay AM and O’Sullivan E (1956) Encephalomyelitis simulating poliomyelitis. Lancet 270:761–764.
6. Ramsay AM (1957) Encephalomyelitis simulating poliomyelitis. Public Health 71:98–112. 7. Ramsay AM (1957) Encephalomyelitis in north west London; an endemic infection simulating poliomyelitis and hysteria. Lancet 273:1196–1200.
8. Ramsay AM (1986) Myalgic Encephalomyelitis: A baffling syndrome with a tragic aftermath. M.E. Association Journal 1986, UK.
9. Jason LA, Najar N, Porter N, and Reh C (2009) Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. J. Disability Policy Studies 20:93–100.

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Please write Dr. Francis Collins of the NIH and ask him
to fund important biomedical research in Neuroimmune Disease Research.
http://energycommerce.house.gov/index.php?option=com_content&view=article&id=2042:hearing-on-nih-in-the-21st-century-the-directors-perspective&catid=132:subcommittee-on-health&Itemid=72

Thank YOU Annette and Harvey Peterson, Dr Judy Mikovits, 

and every person, volunteer, Dr and patient that has helped to 

OPEN these doors in September.. 

Seriously... Just LOOK what they have already accomplished

WITHOUT A BUILDING OF THEIR OWN YET !!!

 Even if you can't come to the FundRaising Gala in September to help them Celebrate the Grand Opening together....

You CAN STILL HELP by donating even $5, $10, whatever you can... every single little bit HAS Helped.. and many patients and Annette said HAVE BEEN donating, broke and sick as they are... cuz they ALSO CARE about those that come after them.

Donate here PLEASE ♥♥♥

And Bless YOU for your Help..

It is TRULY Appreciated by the 28  million of us with this...so far.

If you can't DONATE, you can always PLEASE even forward this blog to someone that you think might be interested or willing to help... at least you will also be HELPING to Educate the Public ♥♥♥

 

#61~ Annette Whittemore CFSAC Testimony 5/10/2010

Written Testimony Submitted to the CFSAC by Annette Whittemore/WPI  for the CFSAC May 10, 2010 meeting.

Reprinted with permission from the WPI.

Whittemore Peterson Institute

Testimony of Annette Whittemore

CFSAC

April 25, 2010

The United States governmental entity responsible for alerting and protecting the American public from threats to their health is the Centers for Disease Control, better known as the CDC.  The CDC’s mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

Yet, one to four million Americans still suffer from a poorly understood, debilitating disease which was first identified in the United States in three separate recorded outbreaks over 25 years ago, including:

Incline Village, Nevada

Lyndonville, New York and

Miami, Florida.

The individuals who became ill that year came from various economic classes, different age groups, including children and adults and affected people in a small rural town, a large lakeside community and a huge metropolitan area.   The individuals in those outbreaks all exhibited the same complex symptoms, yet none of the patients were examined by the government employees who were sent to investigate. 

The doctors who alerted the CDC were not told of the other communities in the United States experiencing the same phenomenon.   Despite the serious concerns about the severity of the patient’s symptoms and their rapid decent into disability, the CDC refused to investigate further.  The CDC concluded that this was a new form of EBV mono.  They convened a meeting, in which they decided to call this illness “chronic fatigue syndrome” rather than adopt the name that was being used in the UK: myalgic encephalomyelitis (M.E.).  M.E. at that time was already a well characterized infectious neurological disease causing a similar complex illness.

Thus began a twenty five year battle between patients and doctors who fully realized the severity of this illness and a government that has yet to commit an appropriate level of financial resources to aid the discovery process necessary to help individuals with this disease.  Not only has the lack of adequate resources been a major road block to discovery, but the CFS scientific review committees are currently ill-equipped to review many of the biologically complex scientific grant requests.  Attempts to engage in biological research by basic researchers from virology and retro virology have generally been turned down in favor of studies aligned with a psychological theory of illness. 

Years of misdirected research have resulted in a lack of a medical specialty for this group of patients to rely on for expert care.  Doctors have been left without adequate knowledge and the tools to effectively care for their patients. The sick have been turned away by major medical centers, ignored by government, and their claims denied by insurance companies who refuse to pay for diagnostic tests and experimental treatments.

How could this happen to such a large group of sick people in this day and age of modern medical technology?  Who could possibly benefit by this inhumane treatment of sick human beings?

My husband is fond of the quote made popular in the Watergate era: “follow the money”.  His take on it is more specific: When something doesn’t seem right, “follow the money”.

 

So if one follows the money in this case, we can perhaps begin to unravel the mystery of this crime against humanity.  We know that when this disease was first reported to our governmental authorities, another more deadly illness had recently been identified, HIV-AIDS.  Our nation was debating how to approach this new “gay man’s disease”, until it struck a young child and a famous athlete, neither who were gay.  Countries around the world were struggling to meet the heavy demands of HIV, when myalgic encephalomyelitis began to take its equally heavy toll on the lives of the innocent.

But this disease was a disease that apparently could be ignored.  It seemed to impact mainly woman.  There was no immediate organ damage that could be detected.  It did not kill the afflicted rapidly enough; it only caused a profound disability that could last a life time.  

However, a life time of disability requires a life time of disability payments and huge medical bills; something no government or private health insurance provider wants to be responsible for.  The only way to avoid medical and disability payments for the sick is to claim the illness is due to a psychological disturbance or mass hysteria, blame the patient for their illness and offer cheap psychological treatment and exercise therapy.   As long as no one discovers the true cause of the disease, these entities are safe from any expectation of actual medical intervention.  A physical disease may remain in the psychiatric domain if it is called a psychosomatic illness; “meaning a disorder in which mental factors play a significant role in the development, expression, or resolution of a physical illness.” 

Despite years of private research and thousands of papers describing the physical deficits found in these patients with this illness, our government and medical entities continue to ignore the evidence in favor of those who espouse a simplistic psychological theory of illness. 

But those who stand to gain by misdirecting research funding can not stop the truth from being revealed.  What greater evidence is required to support the request for responsible action than the finding of a new human retrovirus replicating in this population of patients?  Knowing the significance of this discovery, why has the US government not asked CFS patients to stop donating blood until the cause of this disease is better understood? 

Prostate cancer and XMRV research has been made a priority at the National Cancer Institute and major universities as evidenced by the publication of new findings.  Yet, there has been no such commitment by those at the National Institute of Allergy and Infectious Disease.  Why is this?

Are we to blindly and meekly accept that those who suffer from XMRV (who have been inappropriately branded as having a fatiguing illness called “CFS”) are undeserving of the same medical care afforded others infected with a retrovirus?

I believe this is not time to end the CFSAC but rather a time for the CFSAC to exhibit its commitment by sending its strongest recommendations to the Secretary of Health and following those recommendations with actions:

·      Educate the research and medical communities about the number of individuals impacted and the severity of this disease.  Recommend that the CDC define ME by the immunological and neurological abnormalities that exist, the many co-infections that are frequently found and the physical complications of this long term illness.  It is time to agree on a proper name for this disease and to reflect the most current scientific knowledge in the definition of this disease.

·      Seek congressionally mandated research dollars that more closely match the number of individuals impacted by the disease and the severity of the illness.  Millions of Americans are ill with ME and yet the NIH allocates a mere $1.00 to $4.00 per year per person.  The loss in economic dollars is conservatively estimated to be $9 billion per year.  With that kind of economic loss to our society, why isn’t this disease funded at the level of hepatitis C which is currently at $93 million a year? Patients diagnosed with ME also suffer from inflammatory bowel disease, cognitive impairment, fibromyalgia, anemia, gall bladder disease, chronic Lyme disease, sleep disorders, chronic pain, depression, hormonal dysregulation, frequent viral infections, heart disease, and cancer.  Yet these sick Americans are forced to seek unproven medical treatments for symptomatic relief due to the lack of scientific understanding of the underlying immune deficiency that is driving this disease.

·      Request that research be conducted on XMRV in infectious disease by the NIAID and outside researchers to continue the valuable work begun at the WPI.  The human retro virus, XMRV, has been found by WPI researchers in diverse disease populations, including cancer, autism, fibromyalgia, gulf war illness and ME, in men, woman and children.   Yet four of WPI’s most recent grants were denied funding on the basis that not enough is known about XMRV to warrant further investigations. 

·      Create and fund Centers of Excellence in neuroimmune diseases to care for patients with complex disorders caused by infectious agents.  Scientific medical criteria should be developed that hold these Centers to standards of performance that include timelines and effectively measure demonstrated outcomes.  All such Centers should be interconnected to provide medical consistency in care.  They should include research, clinical care and medical education components from classroom lectures, to residencies and fellowships in neuroimmune disease.

·      Request a congressional hearing to determine why this disease has been so poorly managed by the CDC and NIH, in order to assure the American public that the failure to recognize a serious threat to the nation’s health will not be repeated.

There is no question that the CFSAC, as defined by its charter, can be an important avenue to a meaningful discourse between those who care about M.E. and those who are capable of initiating action from within the government.

The question is: Has the CFSAC achieved the goals stated in their charter?

The charter states its purpose …..as established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).

Is this goal being aggressively pursued?  Is scientific evidence being reported to the Secretary of Health?  What actions have been taken by the Secretary of Health that would provide evidence that this information is being acted upon?

The Function of the committee is stated below:

The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances. 

The WPI took the earlier recommendations of this committee seriously.   In fact, we built our Institute on the premise that this disease and others very similar to it, deserves “Centers of Excellence” that can bring answers to patients and doctors, in the same manner as multiple sclerosis and muscular dystrophy have successfully done.  We believe that to find answers to this complex disease we must combine the translational efforts of basic and clinical researchers working in collaboration with knowledgeable physicians.  This is the dream of the WPI: to bring discovery to a disease which has impacted millions of lives, to develop effective treatments and to one day provide preventative measures that will stop the spread of the disease.

This is not something that we can afford to do alone.  If this committee will confirm that it is more than a sounding board for frustrated patients and doctors and that it can effectuate the necessary changes in this field, then the WPI fully supports the renewal of its charter.

Martin Luther King, Jr. once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy”.  I believe that courage is the combination of knowing the right thing to do and then doing it. Please show us you have the courage to make this happen.

Thank you for your time and attention.