Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Molecular Interventions June 2010 - WPI

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jun 13, 2010.

  1. VillageLife

    VillageLife Senior Member

    United Kingdom
    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.
  2. George

    George waitin' fer rabbits

    South Texas
    Hi Villagelife
    When was this posted? Is this from their Facebook page or the WPI website? It's a very nice piece it answers some questions and offers some transparency.

    Off topic but does anyone know if Andrea tested positive for XMRV? Also, does anyone know if Annett or her husband have tested???
  3. lansbergen

    lansbergen Senior Member

  4. VillageLife

    VillageLife Senior Member

    United Kingdom
    Andrea is positive for xmrv, poor girl has been through so much!
  5. George

    George waitin' fer rabbits

    South Texas
    Thanks Villiagelife, thanks lansbergen.

    That's the truth! Andrea is a great spokes person or representative or whatever cause she has had every nasty this illness can pass out! She makes me feel positively healthy!
  6. free at last

    free at last Senior Member

    Thanks for posting this, always interested in anything judy or Annette has to say. The whole history of this great institute condensed before our eyes I hope they find a cure for Andrea,

    Isnt it appaling that it takes the love for a child to get anything done in this world, just because the prognosis is mysteriouse and deeply hidden, Yet other illnesses although just as mysteriouse, get so much more funding and support and regognition, Andrea was ill because she hated her parents and freinds.

    Thats not only absurd, but extremly insulting to the family. Not to mention the most rediculouse diagnosis they could ever have had.

    No wonder many affected by this illness, get a kind of millitant attitude, not only from there own treatment by some doctors ( should say lack of it ) but what we read daily about so many people just left to suffer on there own, and ridiculed, and misdiagnosed as mentally unstable.

    You know its mind boggling that even when the evidence is overwhelming that a phsyical organic illness is to blame, that can all just be ignored in favour of the fruit cake theory. Well they are the fruit cakes, for even believing in such rubbish with so much obviouse evidence to the contary.

    Since ive been on this forum ( hasnt been that long ) all i seem to feel the most is anger, with a lot of pity, much confusion, And a feeling that im almost ashamed to be humun. If monkeys had intelligence they wouldnt treat there own kind the way some humans appear to.

    one emotion i missed above the negative i get from this forum, Hope compassion and understanding. Everything i feel about the WPI

    I have to belive that one day, this is all going to change. I thought we had reached that point with the XMRV breakthrough, but so much uncertainty since. When will another study confirm that all the wrongs are going to be righted, that we have a reason for our illness, other than weird illness belief.

    That our self respect can shine again, and others can not argue back, and that a cure will be here for those presently sick, and those that will become sick in the years to come. I hope i see it in my lifetime. im sure the feeling will overwhelm me, as i know it will for you all.
    Great historical record from Annette, apologies for my rantings, first i had read what was told to Andrea, brings it all up again. seems like a re occuring emotion the more i read and learn here
  7. George

    George waitin' fer rabbits

    South Texas
    Still waggin my tail here!

    I've been thinking about the "dry" spell. I really think that there is a reason for it, the lack of positive studies I mean. And I thinks it's a good reason. It's purely opinion, speculation and theory so take it with a milk bone. (grins)

    The CDC and the NIH and DHHS make health policy for the rest of the world really. How goes the CDC so goes the WHO, or something like that. (big grins) The DHHS put an embargo on Dr. Mikovits lectures way back in November of last year (anybody remember that? grins) because they wanted to control the information. Which is what the DHHS is suppose to do. Investigate thoughtfully then and only then release information to the public so as not to cause a panic. Make sure they have good solid facts.

    But like the Chicago article stated the other day, this is a new age and information blackouts, while science "grinds the sausage" (grins, love that Dr. Coffin'isum') doesn't work very well. But the DHHS still has a lot of pull in the "institutional" world, Annette refers to it in the statement about having to 'play the game according to the rules of NIH in order to be considered for funding' and not playing by the rules causing problems with getting funding.

    So we know there are somewhere around 20 unpublished papers on XMRV and CFS right now. Some of the papers like the ones that Dr. Mikovits submitted on XMRV and Autism have been in the pipeline for 7 months now. Why?????

    There all kinds of possibilities but this is my favorite personal opinion. (grins) The CDC study is positive or positive enough that it will create a need for further funding into CFS/XMRV as a possible causative agent. However, the DHHS hasn't finished their study into the issue of XMRV in the blood supply. They barely have their serology test's created (Emory university in May, Dr. Singh in May and WPI in June/July) so before the CDC, DHHS and NIH unleash any more information on the public, which includes the entire world they want to make sure they have things in place that can reassure the public.

    Like a reliable test, knowledge of the blood supply, tissue supply, organ supply, potential problems (been a lot of articles about organ and blood supply problems lately, hmmmm) and the promise of drugs or drug trials being on the way. All that is going to be like, hmmm, (counting on paws) at least another two or three months????

    But while they may be holding up the positive studies to release all at once, there is no reason not to allow negative studies to be published. In fact the publishing of negative studies buys them some much needed time.

    So I think (and I only have two brain cells, so make of that what you will, grins) that the organizations like the CDC and the DHHS and NIH are doing the responsible thing. I may not like it. (grins) but I think it really is both ethical and responsible.

    Well, that's my two brain cells. . . I mean cents. (grins)
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    George, I suspect that you are right that if there is delay, reason for it is to make sure testing is available and assurance for blood supply is in place first.

    But I disagree that it is ethical and responsible. Every day that passes is possibly another person infected by an ignorant CFS person. Knowledge is power, ignorance kills.

    Likely though, they also want to know cause before they announce. They want to say definitely, "yes it does cause CFS" or "no it doesn't cause CFS." And remember, cause is usually discovered along with treatment. The two are usually revealed at same time.

    Now, if there is unpublished information that shows XMRV is in blood supply and is more prevalent in CFS folks or is infectious, then what is going to motivate them to come forward?

    Some good old fashioned news reports. That is why the Chicago Tribune article is good. And now Annette's article. Let's get some people in the public to start demanding answers. We need some public pressure.

  9. grant107

    grant107 Jean

    Ormond Beach, Fl
    I am so grateful to Annette Whittemore. She has done so much for all of us. Donating to WPI is very necessary.
  10. omerbasket

    omerbasket Senior Member

    I fully agree with you, grant. About the thanks to Annette Whittemore (and to Dr. Mikovits, Dr. Lombardi, Dr. Peterson and the others in the WPI), and about the need that anyone who can would donate to the WPI in order for them to be able to help us furthur.
  11. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    A while ago we kind of had a donation thing going. My calender is marked to send another $50 to the WPI next week. If we can all send whatever we can whenever we can, it's got to really help. don't think that even $10 won't be put to good use, every little bit helps!

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