exciting news from Whittmore Peterson Institute

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Oct 20, 2008.

  1. Bluebottle

    Bluebottle New Member

    The Insitute are isolating a new virus and developing a blood test for us, video here:

  2. SpecialK82

    SpecialK82 New Member

    that's so exciting - I can't wait to hear more!

  3. doxygirl

    doxygirl New Member

    WOW!I thank you so much for posting this!!!!!!!!

    I cannot believe they have finally found a test!

    Iam doing the happy dance as I am laying in my bed!LOL

    So...correct me if Iam wrong..but if what I understand is correct from this video. and what the lab technician says...........

    CFS IS A VIRUS!!!!!!!!!!!!!!!!!!!!

    Thanks to this lab and it's relentless studies and research we WILL have a test...and SOON!

    There will be no way any more of the ignorant or mean people who belittle, degrade or deny us that our dd is not real....when we have our test....


    TY so much for posting this ....this just made my day!!!!!!!!!

    PLEASE help me to keep this bumped up ..THIS IS HUGE NEWS!!!!

  4. banya

    banya New Member

    So what do we know about chronic fatigue syndrome? Those who have it have a huge rate of shingles as well. We know the disease often ends up as cancer. And now, because of scientists right here in Reno we might know what causes it. "We have identified and we are in the process of isolating a new virus that may cause cfs in the cohort."

    The disease often ends up as a cancer??? I guess I never heard that.

  5. ladybugmandy

    ladybugmandy Member

    yup....lots of cancers associated with chronic viral infections....

    the cancers in CFS are usually:

    - brain cancer
    -and i THINK breast cancer
  6. spacee

    spacee Member

    They tested me for HHV6 A&B. The titers came back sky high.Even though the tests were run in the 1990's, and I received a copy of them....I only found it THIS WEEK.

    No doc at the NIH mentioned it to me nor did my own Infectious Disease doc. I guess because there was no treatment that they knew of. I stumbled across Kutapress (no longer available) and later the researchers learned it killed HHV6...not permanently evidently.

    I can't believe it has taken me so long to see that in the records...keep in mind I had 3 young children when I was going and there was tons of labs done.

    Very interesting. Now I treat the HHV6 with Transfer Factors. It isn't a cure but it helps.


    Nofool. My good friend who came down with CFS at the same time as I, within 3 years had lymphoma. She has survived it but went through the bone marrow transplant. She is about a 15 year survivor.

    I do agree, however, that we longtimers have seen these declarations a long the way that didn't pan out.
    [This Message was Edited on 10/20/2008]
    [This Message was Edited on 10/20/2008]
  7. tansy

    tansy New Member

    It was after this outbreak that the CDC became involved and the construct of CFS came into use even though the definition did not refect the clinical findings during this classic outbreak of ME (as defined by Ramsay et al).

    So yes the incidence of certain cancers is higher; Dr Byron Hyde also found a rare form of thyroid cancer in ME patients.

    Over the years I have also been struck by the high incidence of shingles within the ME patient community; as with reactivation of EBV frequently identified in ME and CFS it indicates the immune system is unable to keep this class of viruses in check.

    There are conflicting views over the role of chronic or smouldering infections; since some do well treating these infections, and biopsies have shown evidence of a viral infection, we should not ignore the possible role of viruses in ME and CFS.

    An affordable diagnositc test for CFS and ME would help; Drs Gow and Kerr are also hoping they can develop one. There are other illnesses where test results are not the sole basis for a clinical diagnosis; but it's the controversy over ME and CFS that make such a test necessary if only to silence the doubters.

    I look forward to seeing the results of research project at the Whittmore Peterson Institute.

    tc, Tansy
  8. ladybugmandy

    ladybugmandy Member

    i think the fact that the rate of cancer is higher in CFS patients is acknowledged by most researchers.

    i know demeirleir says he had a few patients with breast cancer in their 30's - very rare - who had had CFS for a long time and had not been treated.

    EBV has been found in a percentage of aggressive cancer tumors.

    i cannot find it now but there is a site that lists thousands of people who have died with CFS....a very large number of them had cancer.

    [This Message was Edited on 10/20/2008]
  9. ulala

    ulala New Member

    cryptovirus or parainfluenza virus-5?? I see cell signal listed at the bottom in referemce to one of Cheney's patients.

    Potential Animal (Zoonotic) Virus Identified
    in Patients with Chronic Fatigue Syndrome,
    Multiple Sclerosis and Epilepsy


    Needham, MA May 31, 2006 -- Recent independent scientific
    research funded by the National CFIDS Foundation, Inc. (NCF)
    of Needham, MA provided preliminary confirmation of a new
    virus identified in patients with Chronic Fatigue Syndrome. The
    Foundation's medical research dovetails with that completed to
    date by Cryptic Afflictions, LLC *, a private company.

    Dr. Steven J. Robbins, virologist and Chief Executive Officer of
    Cryptic Afflictions, LLC has discovered a major neuropathogen
    identified as an RNA virus designated as Cryptovirus.

    Substantial clinical and molecular evidence indicates that this
    virus is involved in the development of neurological disorders
    that include Chronic Fatigue Syndrome (CFS), also known as
    Myalgic Encephalomyelitis (M.E.) by the World Health
    Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy
    of unknown cause.

    According to the company, "This previously undetected virus
    appears to be of significant importance to researchers looking
    for a cure to Multiple Sclerosis and many other neurological

    Antibodies to the newly discovered virus were found in the
    cerebrospinal fluid and blood of over 90% of the patients tested
    with Multiple Sclerosis. It is believed that this newly discovered
    virus may prove to be responsible for a host of neurological
    disorders. Tests are currently being prepared for tissue
    samples of lesions within the brains of patients with Multiple
    Sclerosis. This will be the final round of tests before
    approaching the FDA for approval of the diagnostic tests."

    Dr. Robbins' evidence includes the presence of virus-specific
    antibodies in the serum and cerebrospinal fluid of patients
    suffering from these disorders, the ability of the virus to cause
    virtually identical disease in experimentally-infected animals, and
    nucleotide sequence data that indicates that the virus is
    pandemic and represents a single virus species much like

    A recently published medical journal article suggests that
    Cryptovirus is most similiar to Parainfluenza Virus-5, a
    rubulavirus in the paramyxovirus family. Another rubulavirus
    related to Cryptovirus and Parainfluenza Virus-5, that has gained
    national attention for its large outbreak, is the mumps virus.
    Rubulavirus infections have been associated with encephalitis,
    meningitis, orchitis, inflammation of the testicles or ovaries,
    spontaneous abortion, and deafness.

    The NCF has conducted its own preliminary research into the
    potential role of Cryptovirus and Parainfluenza Virus-5 in
    Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical
    Director for the Foundation stated, "Our own funded research
    first confirmed the lack of a vital protein, known as Stat-1, in the
    blood of patients with Chronic Fatigue Syndrome. Stat-1 plays
    an indispensable role in immunity.

    Without this protein, patients are unable to effectively fight viral
    and bacterial infections. Thus, the next logical question to be
    answered was 'Could a virus be causing this Stat-1 depletion?'

    "Cocchetto continued, "Parainfluenza Virus-5 is a virus that had
    to be seriously considered as a possible piece of this medical
    puzzle because it directly targets and destroys the Stat-1

    Gail Kansky, President of the NCF stated, "Once we determined
    the status of Stat-1 in patient blood samples, we knew that we
    had to look for possible evidence of Parainfluenza Virus-5
    infection. It was during this phase of our own research that we
    actually learned of Dr. Steven Robbins' discovery of Cryptovirus
    specific antibody reactivity in patients with CFS."

    Dr. Robbins had tested fifty-six serum specimens from patients
    who had been diagnosed with CFS along with eleven matching
    cerebrospinal fluid samples obtained from physicians in
    Brisbane and Southeast Queensland.

    Dr. Robbins had determined that 96% of the blood samples and
    91% of the spinal fluid samples tested positively for Cryptovirus
    specific antibodies in these CFS patients.

    The National CFIDS Foundation's own research began to
    dovetail with that of Dr. Robbins. Scientists funded by the
    Foundation performed numerous tests for Parainfluenza Virus-5
    that included antibody as well as PCR specific probes.

    Antibody testing provided some initial hints, however a PCR
    specific probe picked up the infection in a former patient
    of David S. Bell, M.D. and Paul R. Cheney, Ph.D., M.D., both
    considered well known specialists in the field of Chronic Fatigue
    Syndrome. Kansky commented, "Though our funded research
    continues in diagnostic testing, our findings have served to
    highlight the important work of Dr. Robbins and the role of
    Cryptovirus and Parainfluenza Virus-5 infection in CFS."

    NCF scientists utilized the NIH Genbank database to find the
    nucleotide sequence for a specific viral protein of Cryptovirus
    that matched 100% to the porcine (swine) strain of Parainfluenza
    Virus-5 known as the SER strain. In 1994, scientists at Bayer
    AG in Germany first isolated the SER strain from swine with
    Porcine Reproductive and Respiratory Syndrome.

    "This may represent a zoonotic process since zoonotic viruses
    are those that can be transmitted between animals and people"
    stated Cocchetto. Kansky commented, "Here we have what
    appears to be the same viral strain of Parainfluenza Virus-5 on
    two continents and in two different populations, swine and
    humans. Given that the NCF found Parainfluenza Virus-5 in one
    CFS patient in the United States certainly raises the bar." The
    Foundation is currently funding further research.

    The National Institutes of Health (NIH) has several ongoing
    grants in the Parainfluenza Virus-5 field. Currently, however,
    there is only one U.S. scientist specifically funded for research
    on the SER strain of Parainfluenza Virus-5 by the NIH.

    Founded in 1997, the National CFIDS Foundation has grown to
    become the largest, all-volunteer patient organization of its type
    in the United States. The Foundation has no paid employees
    and is funded solely by individual donations for the primary
    purpose to fund medical research into the cause and treatment
    and/or cure of Chronic Fatigue Immune Dysfunction Syndrome

    * "Limina Biotechnologies, Inc. is a recently formed subsidiary
    of Global Medical Technologies, Inc. that was established for the
    purpose of merging Cryptic Afflictions LLC and Global Medical
    Technologies, Inc. It is the intent of management to spin off this
    newly formed corporation once the merger is completed so
    Limina can raise capital through its own IPO," according to the
    company's website, www.globalmedicaltech.com.

    For more information on these findings:

    Potential animal (zoonotic) virus identified in patients with
    Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy
    NCF Press Release (2006)- Click here for PDF version:

    Parainfluenza Virus-5: A new paradigm and a serious host
    challenge NCF Paper (2006) - Click here for the PDF version:

    A novel virus (Cryptovirus) within the rubulavirus genus and uses
    therefor Patent. Dr. Steven Robbins' discovery on new virus in
    CFIDS, MS, and epilepsy. Patent (2002) - PDF file format:

    Various informational press releases from Global Medical
    Technologies (2004) - PDF file format:

    Porcine parainfluenza virus 2 discovery by scientists at Bayer
    AG Patent (1999) -PDF file format:

    Isolation of a cytopathogenic virus from a case of porcine
    reproductive and respiratory syndrome (PRRS) and its
    characterization as parainfluenza virus type 2 Archives of
    Virology (1998) -PDF file format:

    Nucleotide sequence for Cryptovirus fusion protein identified as
    a porcine rubulavirus Patent (2003) (PDF file format)

    Cryptovirus fusion sequence returns 100% match for fusion
    protein for SER strain of porcine parainfluenza virus BLAST
    program, National Center for Biotechnology Information,
    National Library of Medicine, National Institutes of Health (2004)
    -PDF file format:

    Nucleotide sequence for the fusion protein of porcine
    parainfluenza virus strain SER National Center for
    Biotechnology Information, National Library of Medicine,
    National Institutes of Health (2003) -PDF file format:

    Porcine parainfluenza virus strain SER sequence doesn't return
    match for the Cryptovirus fusion sequence though it is a 100%
    match BLAST program, National Center for Biotechnology
    Information, National Library of Medicine, National Institutes of
    Health (2004) -PDF file format:

    Methods for diagnosis and treatment of chronic immune
    diseases; Stat-1 deficiency discovery in CFIDS (2003) Patent
    PDF file format:

    Viral mechanisms of immune evasion Immunology Today review
    paper (2000) -PDF file format:

    Silencing STATs: Lessons from paramyxovirus interferon
    evasion Cytokine and Growth Factors review paper (2004)
    -PDF file format:

    The V protein of Simian Virus 5 inhibits interferon signaling by
    targeting STAT1 for proteasome-mediated degradation Journal
    of Virology (1999) (PDF file format)

    Interferons: cell signalling, immune modulation, antiviral
    responses and virus countermeasures Journal of General
    Virology (2000) -PDF file format:

    Risk factors associated with Chronic Fatigue Syndrome in a
    cluster of pediatric cases Reviews of Infectious Diseases (1991)
    -PDF file format:

    Relationships and host range of human, canine, simian and
    porcine isolates of simian virus 5 (parainfluenza virus 5) Journal
    of General Virology (2004) -PDF file format:

    In vitro identification and characterization of a virus isolated from
    a dog with neurological dysfunction Infection and Immunity
    (1981) -PDF file format:

    Potential role of persistent paramyxovirus infection in Chronic
    Fatigue Syndrome Interim progress report and research
    proposal (2005) -PDF file format:

    [This Message was Edited on 10/20/2008]
  10. ladybugmandy

    ladybugmandy Member

    they have been looking into many viruses over the years, but i think that HHV6 is the one that peterson thinks is most important (but i could be wrong).

  11. Bluebottle

    Bluebottle New Member

    thanks ulala, I hope they make their findings public very soon.
  12. Forebearance

    Forebearance Member

    Well, I'm happy to see the W-P Institute producing results already.

    I noticed when I was watching the video that Judy the research director said that she thinks this new virus may be the cause of CFS "in this cohort". That means just the group of people they took samples from.

    It sounds like they took samples of people in the Reno area. I remember reading before that HHV-6 seemed to be rampant among these people with CFS.

    Dr. Peterson is very set on the idea of CFS being caused by a virus, I know. Some people might say that a virus is one of a few causal factors that work in concert.

    [This Message was Edited on 10/21/2008]
  13. emmally

    emmally New Member

    So is the virus that they claim to have identified as the cause of CFS hhv 6 or are they talking about a completely different virus?
  14. jasminetee

    jasminetee Member

    I don't know the answer to that emmally but I have heard that CFS might be caused by a mutated Polio Virus. I've always had an affinity for that theory because it explains our symptoms to me especially since we often have trouble breathing and walking. In Osler's Web a new virus was found invivo (in the living body) of PWCs but no one else has been able to find it again although some researchers say they tried to. The problem is that the researchers who tried to replicate the original tests did their testing invivo (outside the living body and in an artificial environment) and when they didn't find it they just gave up.

    I'm guessing that invivo testing must be much harder to do. I'm going to look back in Osler's Web for that info and I'll email the W/P Institute and ask them about that. Tragically, the researcher who found the original virus got in a car accident and ended up in a wheelchair, my memory is foggy now as I read that book years ago but I thought she might have also developed CFS herself. Unfortunately she was unable to continue with the research she was doing for us.

  15. emmally

    emmally New Member

    Well I am assuming since they claim to have discovered the virus that it must be new and therefore cannot be any of the allready discovered herpes viruses. I hope along with this new virus that they have discovered what can stop it. Does anyone know when they plan on releasing there findings?
  16. findmind

    findmind New Member

    If HHV6 A or B is the cause, why isn't it found in all cases of CFS/ME?

    If HHV6 is the cause, and the NCF has investigated it and PIV-5, why have they decided to send their research in a new direction, looking for an "unusual type of lymphoma which is not even mentioned/researched by the leading lymphoma organizations"?
    (As stated in the last issue of their "Forum" newsletter.)

    I've heard it all before: this virus, that virus, etc.

    Wait, folks, until YOU get proof through YOUR blood tests (not yelling, just emphasis, ok?)....

  17. ladybugmandy

    ladybugmandy Member

    what about EBV? many studies have now determined that EBV can trigger CFS in approx. 10% of people. are they saying a new virus might be traveling with these EBV cases?
  18. mindblower

    mindblower New Member

    This is actually a local tv news report helping promote, very much dramatize, the work of the new Neuro-Immune Disease Center looking into ME/CFS. The virus being discussed is HHV-6A, new to the public, but not new to us.

    It's only an extremely small subset of ME/CFS that Dr Peterson/WPI research is GUESSING might have HHV6-A virus as its cause. It seems this attempt has already failed or will soon be proven as failed, so for anyone within this community now to suggest its almost certain some virus causes ME/CFS is simply unfounded, ridiculous.

    Also, there may be justification for brief tv news reports to use "cancer" as a hook to raise attention and awareness of ME/CFS as a serious medical condition, but for this community to confuse such dramatics with facts, as if there is some clear evidence rates of cancer are higher or agreed to be higher by most ME/CFS researchers when this is simply not true does us a disservice.

    MB[This Message was Edited on 11/22/2008]
  19. Sun_Rae

    Sun_Rae New Member

    ANY publicity, in my opinion, is a good thing. How many of you have family who believe if it's been seen on the news then there must be some validity to it. I, for one, will welcome it and any thing else that will publicize what we all go through. Awareness and understanding are half the battle in my opinion.
  20. TeaBisqit

    TeaBisqit Member

    My main concerns are, what if not all of us have the same exact cause of our illness? What if only some test positive for this new virus? Will the government then use this as an excuse to throw us off our SS when we are still genuinely ill, but we don't have a blood test for whatever is still making us ill?

    I suspect that not everyone who is ill will have the same exact cause. And this is going to cause problems.

    I'm hoping I'm wrong and that this will be it. But the way things are going, It Could Be Bunnies. I've heard a million supposed causes. Biofilm, micoplasma, Advanced Lyme and co-infections, bad vaccines, chemical exposure, Viruses, Bacteria. Seeing as how the majority of us worldwide present with the same exact symptoms, I'm guessing there is one underlying trigger for it. The problem is finding that trigger, finding the right trigger.

    We do need validation more than anything else. We need the world to sit up and see that there is a cause for this and we are genuinely ill.

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