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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Sunday, June 20, 2010

#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


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.


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.


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.


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.

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.


Please write Dr. Francis Collins of the NIH and ask him
to fund important biomedical research in Neuroimmune Disease Research.

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

 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 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 ♥♥♥


Sunday, June 13, 2010

#71~ ME/CFS videos- "What's wrong with ME ? "

If YOU had been physically sick for more than 20+ years 
would YOU like to be told it was ALL IN YOUR HEAD?

I felt at this point it was time to share some the recent videos 
to help others understand Just HOW fricken LONG this has 
gone on and What a CRIME it is That Medical AUTHORITIES 
IN A NUMBER OF MAJOR COUNTRIES have tried to ignore 
this Pandemic and attribute it to a "psych" problem...

MORE Likely~ THEY have the problem of DENIAL and are 
causing a HUGE loss of Economic income to their countries 
and depleting the family resources of all of the families that 
care for the patients that have ME/CFS... 
Just listen to Dr Bell's Testimony before the CFSAC.

Many times leading to SO much frustration, NOT only for the 
families that end up in bankruptsy or divorce.. 
but ALSO the many patients that have already been 
ignored for 20+ years and abused by the medical profession 
and can SEE what this is doing to their families.. 
and that have NO hope left and end up
committing suicide.. 

In addition to those that die from related/associated life 
threatening conditions that have BEEN IGNORED because 
they had been told they were a psych patient.. 

YES< ALL of this has been Documented in MANY PLACES 
and SOON all of this will be made MORE accessible to the Public 
and it's will prove to be the Medical Pandemic Equivalent 
of the BP Oil Spill/Destruction of Nature  in the Gulf of Mexico, 
that has and will cost many lives (human and otherwise) 
and take YEARS/Decades to fix IF ever..just because they 
ignored some safety rules and chose to go the quick and easy way... 

Well Medical Authorities AROUND the world.. YOU ALSO 
"Will be Guilty" of Ignoring a Pandemic... 
and you HAVE been told this MANY Times.. 
so don't play innocent with us..

The PROOF is being uncovered "right now" in many 
Scientific Research Labs and soon there will be MUCH MORE 
news, besides just a Dr Oz TV show..

ALL of these patients DESERVE even BASIC medical care..
but many "after all these years" are alone, bedridden, and 
have trouble even with basic daily care..Does ANYONE CARE?
SHAME of the Governments that have caused this to happen 
to their Citizens w/o even caring enough to DO Proper Research 
and slamming them with a Hippie "Yuppie Flu" name or even 
worse sluffing them off to the psych wards.

Since a picture is worth a thousand words.. Here are some 
videos...many new or old to you.. but worth sharing if you 
haven't seen them or wish to "share them with others you 
WISH to educate." 
PLEASE Turn your Volume UP.... and RePlay if Necessary.

God BLESS ALL of YOU that are Choosing to Help us...

Please REMEMBER that in the "Rest of the world"
"What the USA calls CFS~ is called ME",
which is VERY different from plain
chronic fatigue.
This video basically explains ALL of the same symptoms
that "REAL ME/CFS patients in the USA HAVE" !!!
Those that are "simply fatigued" or "depressed"
will NOT have MOST of these symptoms. Period.

The following are the 2 Movie Trailers  created "so far"
that will be a Documentary about this whole FIASO.

What About Me? Trailer - UK from Double D Productions on Vimeo.

What About Me? Trailer - USA from Double D Productions on Vimeo.

We THANK Double_D Productions with ALL our Hearts and 
LOOK forward to seeing the completed film. 
They just returned from the Cannes Film Festival, so this 
is NO JOKE folks... Thankfully and About TIME !!!

I will leave you with a few that will tug at your hearts
so you can SEE and HEAR the Reality of this illness.

For dear Sophia, in the words of her mother..
PLEASE UP Volume and LISTEN thru her accent.

Dr Donnica Moore explains in more detail about what
can do and WHY it is SO IMPORTANT and JUST the beginning.

This was a BIG accomplishment for us to get Dr Oz to 
an actual SHOW (re-DO from a show a few weeks B4 that 
was ONLY about chronic fatigue NOT CFS...
AND TRUST ME, he got a LOT of Flack for that comment about exercise because he DOES NOT 
TRULY understand the extent of Relapse after exertion.

There is even a lab strictly set up for studying this 
that is part of the University of the Pacific, Stockton, CA. called The Pacific Fatigue Lab and here is there link
Their Head (Dr. Snell) is NOW the Current Chair of the  CFSAC 
(Chronic Fatigue Syndrome Advisory Committee)
that reports to the Sec. of Heath on Pres. Obama's cabinet.

XMRV "very well MAY' also prove to be the link for atypical MS,
Autism, Fibromyalgia, Lupus, Lyme Disease, Multiple Chemical Sensitiviy,
and how many more... we don't know YET... 
We DO KNOW that is IS found in men with Prostrate Cancer and 
HAS shown up in some patients with Lymphoma.

Please Help the ONE place that is currently already doing the Research along with other facilities to get us help...
The Whittemore Peterson Institute, Reno, NV. a 501C3 

YES, we ARE being/have been abused and it DOES KILL...
It "could" be your son or daughter next...
WILL you Help?

Bless you for Reading and watching THIS far..
Many more NEED to be Educated about this..
We have already been informing the blood banks
of the World and working with them to screen for this 
just like they were made to for HIV...

YES, we ARE fighting with not only City Hall, but many governmental
agencies around the World to Educate the public
for the health and safety of the WORLD.

Bless you and PLEASE Share this info, even if you
can't afford to donate or help in any way.. 
Every "tiny bit' of help is IMPORTANT ♥♥♥

Please leave us comments and let us know IF or How
any of these diseases has touched your life yet...

We ARE a World Family now working together for 
our Health and Well being.. Health effects EVERY
ASPECT of your Quality of Life...

May  you help NOW before someone you KNOW
is hit by this terrible life-altering illness...

Friday, June 11, 2010

#70~ New Jersey+N.E.I. Center~ Congrats P.A.N.D.O.R.A.

"GOOD News FLASH ~ for a change.. 
regarding the much needed NEI Center
Neuro Endocrine Immune Center in New Jersey:

from: Marly Silverman, founder of P.A.N.D.O.R. A..

YOU DID IT! New Jersey !!!

Senate Resolution 20 passed unanimously!

Today the New Jersey Senate Resolution-20, supporting 

the establishment of the NEI Center in New Jersey, was passed 

38-0 in a very emotional and empowering moment. 

It was YOU, who made the phone calls, who sent the the 
e-mails, who wrote the letters, gave financially "until it hurts", 
and it was due to you our team of incredibly committed 
Advocates Extraordinaire who pulled this off. 

'It was simply the work of committed citizens, each one of you, 
who stood behind our grass-roots, patient-driven efforts to get 
this under way.
It is YOU who deserves all the accolades."

Today is indeed a historical moment, because today the 
victory belongs to our entire patient community. 
Today your voice has been finally heard! 

For now I am celebrating, but soon a press release will be 
disseminated with additional information. 

Thank you for the opportunity to serve YOU and to continue
to reach for our dream come true grass-roots effort of the
establishment of the NEI Center in New Jersey. 

Thank you Veny, Thank you Sandi, Thank you Ken! 
Without you all, I would not be celebrating this milestone today. 
To my family, to my Mom Zuzu, of blessed memory,

is watching over me right now. To my son Larry, who has 
stood by his Mom, and to my hubby Stephen, for being always 
my rock and my best friend. 

Tonight we all celebrate! 

Tomorrow we will continue the journey.

In Good Health and In Beauty,
Marly Silverman

http://www.neicenter. com

Here's the "Press Release"

♥♥♥ PLEASE Share the GOOD News ♥♥♥ 

Wednesday, June 9, 2010

#69~ Reactions to UK Dr admitting that "ME is REAL"


Re: By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010 #1

As a sufferer of severe ME (unable to sit up in a wheelchair since a viral infection 14 years ago), I would like to applaud Dr Scurr for his courageous and honest article admitting that, after attending the Fifth World Conference into ME/CFS, he realizes he had been wrong to attribute ME to psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). 

I hope and pray that his medical colleagues will have the courage to follow his example!

Yours sincerely
Veronica Jones
There is no doubt about the warmth of the reception that Dr Martin Scurr will receive from people who have suffered with M.E. (Myalgic Encephalomyelitis) for years, together with the disbelief and derision that accompanies it, now he has had the guts to admit he was wrong to believe that it does not exist (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010). It will be instructive to see what is the public response he receives from his fellow professionals, who still put M.E. patients through the same mill and whether he has a cold shoulder to deal with behind the scenes.

We know, from private correspondence, which begs for confidentiality and anonymity, that there are many more doctors and nurses out there who think the same and also that many of them suffer in silence with M.E. themselves but prefer not to defy the authority of the Medical Profession in such august bodies as the Royal Colleges and NICE (National Institute for Health and Clinical Excellence), who dictate the terms to GPs, for fear of the same sort of treatment meted out to patients.

If you journalists still don't believe it, you're going to have to go under cover to get the real truth for yourselves.

It shouldn't be necessary for doctors to have to confess they were wrong, if they were prepared, from the start, to admit that they just don't know what M.E. is but are willing to find out. The people best placed to teach them are the patients themselves, if they will only listen.

And look what happens when they do: Dr Scurr now understands that post exertional malaise is a cardinal symptom that separates M.E. from the TATT (Tired all the time) brigade. He should also know that a kind of dizziness, called Orthostatic Intolerance is key. There is still a way to go: M.E. is not fatigue. It's extraordinary that people, who admit that the experience of M.E. is not the same at all, continue to use the same name. If you know someone who has clinical depression, you know that you should not be using the same word for M.E. It's perhaps on a bigger scale than trying to say that a bad cold is flu.

This isn't mere pedantry or fussiness over language. Continuing to regard M.E. in these ways is seriously impeding progress towards find a cure for all illnesses in the Chronic Fatigue Syndrome bundle. I hope that Dr Scurr has opened a can of big fat juicy worms.

Our friends at Invest in ME deserve a big pat on the back for repeatedly providing the annual conference venue that formed the basis of one honest doctor's conversion. Thank you.

Yours sincerely
Dr John H Greensmith
ME Free For
Dear Dr Scurr,

Thank you for admitting publicly that you were wrong to have incorrectly placed blame for the cause of ME on psychological or behavioural causes (By the way ... at last I've been convinced that ME is real, Daily Mail, 7 June 2010).

That you have had your view changed is down to the fact that others within your profession were always convinced that the blame was viral in origin. They stood by that view and looked for supporting evidence even though it would have been far easier for them to have gone down the
psychological/behavioural route. 

Sufferers such as I, who have had the condition since 1988 - aged twenty three - following Glandular Fever, have had to cling to hope that one day biomedical research will be able to finally fully exonerate us.

It is often only that hope which has got many of us through the years of disbelief and the dreadful symptoms that we experience on a daily basis living with ME. I don't think we are fully there yet despite the haze being partly lifted but what I do hope is that you will further help to support those experts that have helped to convince you, as there are also people within your profession claiming expertise over this condition but have far more of an influencing input, yet despite the evidence you cite, still remain totally convinced that ME is a psychological/behavioural disorder.

Your Sincerely
Ian McLachlan
by e-mail

Wednesday, June 2, 2010

#68~ UK-ME Association’s FB ‘Watergate" Poli-Psycho Fiasco

Does the ME Association’s Facebook ‘Watergate’ herald the end of the ME Association as a “campaigning charity”?

A short investigative report by Ciaran Farrell.

The recent situation on ME Association Facebook has been alarming and perplexing. We have seen members of the ME community thrown off that site without warning or any explanation, when the people summarily removed have not broken any of the rules of ME Association Facebook.

There was a profound shift in both the policy and practice of the MEA in relation to its Facebook. The MEA did not seek to construct proper or adequate rules for their Facebook. Instead, the main Admin of the site took high handed and presumptive action against members of the ME community by removing not only single posts but also entire threads without explanation, or if an explanation were given, it was not in accordance with the stated rules of MEA Facebook.

Those who were removed from MEA Facebook were merely ME activists who were simply expressing their views as would be expected in a tolerant and democratically run charity. Expression of views is to be expected in the public forums of any “campaigning charity” of the kind that the MEA prides itself as being.

Why then did the MEA change from being a campaigning charity into one in which “activism” was perceived to be a dirty word, and those found guilty of “activism” by the MEA on their Facebook summarily punished for the “sin” of engaging in “activism” by being excommunicated from MEA Facebook as a matter of policy?

Some, but by no means all, of the discussions where entire threads were removed centred on discussions of various psychological topics in which the MEA’s ‘Psychological Advisor’ Ellen Goudsmit was a major contributor. She put up a number of postings which either breached or were on the verge of breaching the rules of MEA Facebook, and then erratically removed a number of them.

On one occasion Ellen Goudsmit became so apparently stressed out by the scrutiny that she and the MEA were under that she became in her own words, “confused”, and appeared to be unable to cope with the situation, and proceeded to report MEA Facebook to Facebook Abuse.

In any event, this would have increased the level of scrutiny that MEA Facebook was under.

Due to the inflammatory and controversial nature of some of Ellen Goudsmit’s posts, she deleted a number of them, thus ruining the integrity of the threads, making it impossible for MEA Facebook readers and contributors to follow them. That in turn enabled MEA Facebook Admin to remove the entire threads on the grounds of the loss of thread integrity. Contributors to the removed threads were confounded by the disappearance of their posts.

The loss of entire threads meant that certain matters under discussion could no longer be seen or read by MEA Facebook users, and so left a great deal of unfinished business hanging in the air as questions went either unanswered or were addressed in a confused, confusing and contradictory way.

This matter was made very much worse since Ms. Goudsmit refused to answer questions about her official position of responsibility as the MEA’s ‘Psychological Advisor’ and the duties and responsibilities of her position within the MEA, whilst at the same time being apparently rather “confused” about the very psychological matters that she had been appointed by the MEA to advise them about.

It is a matter of common knowledge in some quarters of the ME community that Charles Shepherd, the MEA’s “Medical Advisor”, wanted the MEA to appoint Ms. Goudsmit to accompany him as some sort of additional medical or psychological advisor to the MEA, as they had both shared the same view about trying to change the name of Myalgic Encephalomyelitis (which is the official World Health Organisation, WHO, nomenclature for ME) to Myalgic Encephalopathy. Myalgic Encephalopathy is not recognised as a disease or as a disease name by the WHO, and consequently is not an acceptable medical or scientific term.

However, it was frequently not clear what Ms. Goudsmit’s role was on the MEA Facebook, or in what capacity she was responding to MEA Facebook users.

This led to a situation where the MEA were placed in the embarrassing position of having to on the one hand explain away these problems to their Facebook users, and on the other hand moderate Ms. Goudsmit’s Facebook behavior.

It would appear that the MEA simply were not prepared to address the problems outlined, or prepared to moderate Ms Goudsmit’s behavior on MEA Facebook, and therefore they sought an alternative means of dealing with a drama that was fast becoming a crisis.

I can now reveal that I have a certain amount of inside information about this situation.

According to a centrally placed key source within the MEA, who I shall refer to as “Deep Throat”, the MEA Facebook Admin was acting under orders from MEA Trustees. ‘Deep Throat’ was the code name of the secret source that made himself known to the two journalists, Carl Bernstein & Bob Woodward, during their investigation of the Watergate scandal.

It has been known that some MEA Trustees such as the MEA’s Chair Neil Riley, has had a presence on MEA Facebook. Mr. Riley was ‘outed’, as using a pseudonym on the MEA Facebook by other MEA Facebook users (despite his denials). It is less certain whom the other Trustees whom “Deep Throat” referred to, may be.

I had a chance meeting with Deep Throat the other day and he told me that the MEA Trustees, the Chair in particular, had taken a keen interest in what had been happening on MEA Facebook. Apparently, they had decided that MEA Facebook was simply not an MEA priority, and that certain people, including myself, had been removed from MEA Facebook because the Trustees simply did not want us there, and NOT because I or anyone else who had been removed had actually broken any rules or had behaved badly.

So it was political. The MEA Facebook Admin was simply following orders and could not, and ought not, to be held responsible for the decisions taken by the Trustees. Deep Throat informed me that if anybody wanted to complain about the removal of members from MEA Facebook and other moderation issues, they ought to write to the Trustees about the matter, and he made the comment that “much good it will do them”.

This was very much in accordance with my own theory on the matter; that the MEA had sought to preserve its relationship with its Psychological Advisor at the expense of being a campaigning charity and acting in an open, honest, transparent and responsible way towards the MEA’s Facebook users who had raised concerns on MEA Facebook about the MEA and/or the behaviour of its Psychological Advisor.

The decision that the MEA have apparently taken, according to Deep Throat, is to run down their Facebook through removing anyone and everyone who asks awkward questions or who posts anything but the most banal material. That decision was apparently taken on the grounds that administering MEA Facebook was taking up far too much time, and since staff time is money, it was becoming far too costly.

The idea, I gather, is for the MEA to turn their Facebook discussion forum into an extension of their Website which simply provides information without any form of discussion.

This would allow the MEA to place ‘safe’ information items on their Facebook site instead of on their Website on a daily basis, and to only “look in on” or ‘prune’ postings on their Facebook site once every 4 to 5 weeks. According to Deep Throat, that is the level of human resource the MEA are prepared to allocate to their Facebook discussion site.

It was not clear from my discussion with Deep Throat whether or not it was the MEA’s longer term strategy to simply run their Facebook site into the ground, and then close it, but I very much suspect it is, as the specified level of Admin time is unrealistically low for the Facebook site with nearly 900 members.

This whole incident raises several key issues :-

Firstly, the lack of willingness on the part of the MEA to set up clear rules for their Facebook site and consequently their failure to learn lessons from a previous Yahoo Discussion Group, MessageUK, in which the MEA was involved together with Action for ME, and which ended in chaos and failure.

Secondly, that the MEA have failed to act in an open, honest and transparent way. The MEA’s Trustees made their decisions in secret and manipulated matters from behind the scenes, rather than engaging in a full and proper consultation over the problems in order to review the situation on MEA Facebook as I and other MEA Facebook users were urging them to do.

Therefore instead of administering MEA Facebook through a democratically arrived at set of rules and polices, which would be published so everyone would know and understand how MEA Facebook would operate, the MEA Trustees simply sought to preserve their own vested interests by preserving their relationship with their newly appointed ‘Psychological Advisor’.

They consequently decided to re-order their priorities accordingly, so that MEA Facebook users membership was deemed to be expendable in order to force a change in culture on MEA Facebook. If this alone would be insufficient to bring about the required cultural shift, then MEA Facebook would also be expendable.

Thirdly, that in instigating their new Facebook culture that puts anyone who raises issues or asks awkward questions at risk of having their posts removed; in addition the possibility of entire discussion threads being removed without warning; and also putting members at risk of having their membership of MEA Facebook terminated without warning or reason - the MEA have effectively prevented the discussion of ME campaigning issues and the discussion of ME campaigning by activists.

The result of this has been to divorce the MEA from a grassroots discussion of ME campaigning and activism. That has taken place to the extent that MEA Facebook is now hardly used by members of the ME community, either for activism or for mutual support between members of the ME community, due to the climate of censorship, apprehension and distrust that has developed on MEA Facebook.

Therefore the MEA have become even more remote from the grassroots views of the ME community in general, and from ME activism / campaigning in particular. That development regrettably makes the MEA less representative of the views of the ME community, whose voices the MEA claim to represent, but from whom the MEA are becoming progressively more removed by the MEA’s refusal to hear or take the concerns of the ME community seriously.

In view of this, and in view of the decisions taken by the MEA Trustees, have the Trustees effectively set a course for the MEA to follow which is to abandon ME campaigning. If so, how can the MEA justify calling itself a “campaigning charity”?