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Will WPI find the answers for those sufferers who are XMRV Negative!

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Apr 27, 2010.

  1. Otis

    Otis SeƱor Mumbler

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    I'm sure that's disappointing to say the least.

    I was not aware of this subset despite the fact that at one time it would have fit. Personally I would like to see LESS arbitrary divisions until we find MORE common ground amongst CCC-based studies.

    Do the study, track the "subsets" and make conclusions accordingly. Otherwise the conclusions are clouded (I'm sure the counter-argument is that this is a well-defined cohort) by an assumption. It would also seem to limit retrospective studies based on the data. Perhaps real scientists know better than I.

    I'm a gradual onset male for whom pain was a late-arrival but it's bad and it appears to be here to stay.

    Oddball all around, 'tis me. :Retro smile:

    Otis
  2. Adam

    Adam *****

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    Respecting each other

    gu3vara. Nice, well thought through and rational post. Thank you.

    Or not. Do you people even read the press releases about this discovery? originally posted by JPV

    A small gripe JPV - As we are all members of the same online community, might it not be better to show respect to another fellow member, even when pointing out something you believe they may have missed or not understood? Employing phrases such as You people can upset people and suggests a lack of kindred spirit.
  3. jspotila

    jspotila Senior Member

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    My apologies to the moderators if this is an inappropriate threadjack. The thread on the BioBank covers many of the concerns expressed here, including why the criteria are what they are now, and the fact that the Association will widen the criteria as soon as it can. That's not a vague promise; it's a fact.
  4. PoetInSF

    PoetInSF Senior Member

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    XMRV-CFS association is not yet established, let alone the causality. I wouldn't worry over NON-EXISTENT problem for now. (That's the kind of stress that you don't want for your CFS). We can cross that bridge if/when it is ever proven.
  5. Overstressed

    Overstressed Senior Member

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    Many questions, so little answers... It will be though for the WPI to get the research on XMRV-CFS ongoing, so your concerns are valid, realistic I think. But also, how hard will be the search for a cure for CFS ? If, if XMRV is the cause of this misery, we know, there are already anti-retroviral drugs available, thanks to HIV. So, I think funding for any new drugs for CFS would be extremely difficult, and so we're doomed to take antiretroviral drugs for the rest of our lives.

    Sure, it's a huge improvement, but, after 3 decades of research on HIV, if new research is conducted on XMRV, an eradication of this virus is a MUST, in my humble opinion. It can not be the case that the pharma industry make little modifiactions to their existing drugs and establish a chemical marriage between patient and drugs, for a lifetime.

    Eradication of XMRV ? I have my doubts...

    OS.
  6. oerganix

    oerganix Senior Member

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    WPI has 10 other research projects going on

    1) Being XMRV negative by blood test may not mean you don't have it. Sometimes the immune system is so damaged not even antibodies can be found. Sometimes it can only be found in other tissue.

    2) WPI is investigating other aspects of CFS: (All the more reason to donate NOW, if you can.)

    Current Research Program

    Study Title and Description Collaborators

    Role of Chronic Inflammatory and Immune Stimulation by Active Herpesvirus Infection in the Development of Immune Dysfunction in CFS
    Studies of immune abnormalities in this CFS cohort will involve phenotypic analysis of NK, DC, and T cell populations. States of activation and differentiation will be studied to determine whether the cells are immune activators or suppressors due to response to infection. The goal is to understand the imbalance in the immune system that leads to unregulated virus expression. Francis Ruscetti, PhD, NCI
    Dennis Taub, PhD, NIA
    (INIP Research Award)

    Novel Viruses/Co-infections in Subgroups of CFS
    A Virus DNA Microarray (Virochip) was used to screen a cohort of CFS with Immunological defects and increased incidence of Mantle cell lymphoma (MCL). Francis Ruscetti, PhD, Cancer Inflammation Program, NCI

    Role of the Interferon/RNaseL Antiviral Pathway in CFS
    The goal of this study is to characterize defects in the Interferon/RNaseL antiviral pathway which result in viral persistence. Robert Silverman, PhD, Cleveland Clinic

    Role of Inflammatory Cytokines and Chemokines in CFS
    The purpose of this study is to identify and develop the serum biomarker patterns of cytokine and chemokines, which correlate with clinical disease and can be used to monitor intervention. Dennis D. Taub, PhD, NIA

    Host Susceptibility in CFS
    The goal of this study is to elucidate genetic factors of susceptibility and the dysregulation of the host defense system in order to develop biomarkers for diagnostic development and thus predict response to immune modulating therapy and vaccines. Jonathan R. Kerr, MD, PhD, St. Georges University, London UK
    Mary Carrington, PhD, NCI
    Mike Dean, PhD, NCI

    Enumeration and Function of Natural Killer (NK) Cells in CFS
    The purpose of this project is to develop improved NK diagnostic tests for both the number and function of NK cells. Doug Redelman, PhD, UNR, Dept. of Microbiology & Immunology

    Epidemiologic Evaluation of Lymphoma and Cancer Incidence in Nevada CFS Cohort
    The goal of this study is to determine if a possible cancer cluster exists in the cohort of Nevada CFS patients. Paul Levine, MD, George Washington University

    Study of Clonal T Cell Receptor-gamma Rearrangements in Nevada CFS Cohort
    The purpose of this study is to determine the significance of clonal T cell receptor-gamma rearrangements in the pathogenesis of CFS. Dorothy Hudig, PhD, UNR, Dept. of Microbiology & Immunology

    Development of a Whole Genome Transcriptome Assay for HHV6
    The goal is to develop a whole genome transcriptome assay for HHV6 and a sub array for HHV6A specific detection to be used as a diagnostic tool or research tool to understand the viral life cycle in disease. Rachel Bagni, PhD, Applied Technology Program, NCI

    HHV6 Latency in CFS
    The goal of this study is to understand the role of HHV6A latency in bone marrow hematopoietic stem cells in the pathogenesis of CFS. Stephen St. Joer, PhD
    Marianna Bego, PhD, UNR, Dept. of Microbiology & Immunology
  7. Adam

    Adam *****

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    Hi Oerganix

    Thanks for reminding us just how much ongoing research there is, not only at the WPI, I should add, but also in UK. The ME Research UK site lists all the ongoing projects they are currently funding/co-funding. One day there will enough research papers, not only to pinpoint the causes of this disease, but to bury the psyche lobby.
  8. Mithriel

    Mithriel Senior Member

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    A few thoughts on things in this thread. I hope you will forgive me not quoting everything. :Retro smile:

    A research biobank should have people who are most likely to have the illness, then any results can be applied to a wider population. It is like that for all illnesses as you are most likely to get reliable information if you have a homogeneous population.

    From my reading, I think Judy Mikovitzs thinks that XMRV is like HIV. AIDS consists of many illnesses that HIV allows to take hold. XMRV may well be the thing that makes some cases of Coxsackie B or EBV become chronic and severe leading to what we know as ME/CFS.

    Even if XMRV is accepted as the cause of ME/CFS, I doubt if we will all be tested immediately. We might get treated better by medics and benefit agencies based on our long standing diagnosis. :Retro smile:

    Once the drug companies realise how many of us there are the dollar signs will appear and they might do lots of research. Treating our symptoms could make them a fortune!

    As ME/CFS becomes respectable the psyches might lose their stranglehold.

    Mithriel
  9. subtr4ct

    subtr4ct Senior Member

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    On the subject of BioBank patient characteristics, I just added a poll to the testing, treatment, and transmission forum regarding sudden vs. gradual onset illness.
  10. alex3619

    alex3619 Senior Member

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    NonXMRV CFSers will not be forgotten

    Hi, I just wanted to reply to the general debate about nonXMRV CFS patients. According to Judy Mikovits this is currently holding at about 15% of us, if I recall correctly. However, as has been pointed out the testing is still in development. Many of the 15% may be diagnosed in the future, some with just retesting (yes, lab tests sometimes fail for technical reasons).

    The WPI is has a mandate to research and develop treatments for neuro-immune diseases. CFS is just the starting point, and XMRV the lead research candidate for understanding and treatment. I expect that those who are XMRV negative will find research into their condition will slow down, but this is NECESSARY even for them (and I am mindfull this could be me). If these patients have something different, then they are not being served by being included in the same studies. Data from these patients will just be noise in the statistics. The researchers will have to start looking for alternate leads, then design studies, run pilot studies, etc. This all takes time. Since I was diagnosed with CFS, at least two alternate diagnoses have been discovered, one a rare genetic disorder. I was a test subject in one of the follow-up studies for a mutation in the cortisol binding globulin gene (I don't have one of the two known mutation types) but this raises the point that there are many as yet undiscovered genetic diseases. Add to this the likelihood that XMRV wont be the only lurking virus that awaited discovery, and there are many potential avenues still to be researched.

    I have had a private exchange of emails with a leading CFS advocate, and we both agree that nonXMRV patients cannot be ignored. I wont let it happen if I can do anything about it, and there are many who think like me. So if you test negative for XMRV, do not despair. It is just one more step on the path to a solution, and many will be with you. Bye, Alex Young
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    They contact me, I fit the description. I am a male and I have pain. More info please!
  12. jspotila

    jspotila Senior Member

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    You can read more about the BioBank and the current enrollment criteria at www.solvecfs.org.
  13. Cort

    Cort Phoenix Rising Founder

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    I've never heard that males with pain are excluded from the Bio Bank! ?????

    The exclusionary criteria for the first study are what they are because the first study is on XMRV. Because its a pathogen it makes sense to look at people with acute onset. This is a good thing; they're trying to get together the group of patients who are most likely to have XMRV infection and examine them. Basically they're building up as strong a cohort - who meet the CCC criteria, have acute onset and NK cell problems - as they can. With all these problems with the Oxford Definition and the Wessely cohort, etc. - this is exactly what the WPI and the CFS community wants to see with regard to XMRV.

    I have gradual onset and I was upset at first but now I think the CAA should be hailed for doing it this way. They're basically creating the best chance to find XMRV that we've had since the WPI study.
  14. gracenote

    gracenote All shall be well . . .

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    Subtr4ct started a Phoenix Rising Poll on XMRV for sudden or gradual onset. It will be interesting to watch this as more people take it.

    Sudden 4
    Gradual or since birth 2

    Here is the thread:

    For those who are XMRV positive, was illness onset sudden, gradual, or since birth?
  15. aepalisades

    aepalisades

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    Heart Symptoms and Valcyte

    Alphahusky- I had a lot of heart symptoms too- severe palpitations which are almost completely gone after taking valcyte. I only get palpitations now when I lay down in bed at night for less than 1 minute the palpitaions act up, amke me cough. Coughing seems to reset the palpitations so I wonder if now it is due to Mitral valve prolaspe I have that is mild.


  16. Bob

    Bob

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    Hi villagelife...

    I have read Judy Mikovits saying that she will absolutely fight for everyone with CFS/ME, and she won't leave anyone behind... and she won't rest until everyone has an answer...

    She was absolutely passionate about this...

    Unfortunately I can't find the quote... but she definitely said it... I was struck by her passion... and very pleased to hear her say it.

    I share your worries about XMRV villagelife...
    but if XMRV does turn out to be a cause of ME, then I expect that the WPI will then turn their attention to everyone else with ME/CFS who doesn't have XMRV.

    Bob
  17. Bob

    Bob

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    JPV, I don't know if you are aware, but the tone of your message comes across as slightly aggressive... or at least, that is my perception of it.

    To answer your question, yes, we people do read the press releases... and we read far far more...

    XMRV has not been shown to be the cause of ME... but there is a possibility that it might, in time, be proven to be the cause of ME/CFS, or a subset of ME/CFS... or it might end up being another false dawn.
  18. Bob

    Bob

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    Hi villagelife,

    Relating to testing negative for XMRV...

    Another thing that I have read is that Judy Mikovits says that she will keep the XMRV negative blood samples in storage (those tested by WPI) and retest them continuously when new testing techniques evolve...

    She also says that there might be an XMRV type I and XMRV type II, and if this is the case, then she might only be able to detect XMRV Type I at the present time...

    So an XMRV negative blood test at the present time does not indicate that a patient definitely does not have XMRV... it will take time to perfect the testing.

    Bob
  19. Adam

    Adam *****

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    Nice post Bob. We need to keep our faith in Judy M, Annette Whittemore and the WPI and anyone else who is batting for us right now.
  20. anciendaze

    anciendaze Senior Member

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    CFS is, as my on-line name suggests, a long-term problem. My possible acute phase took place before there was a convenient label, assuming I did not get it through vertical transmission. Don't pin all your hopes on a magic wand which will sweep away XMRV and fix everything.

    Research which is not in serious dispute shows XMRV has only three genes which have been completely sequenced and identified by function: gag, pol, env. These provide the capsid containing genetic material, reverse transcriptase, and the envelope shown to the immune system. There are no separate "payload" genes.

    This strongly suggests most of the incredibly varied problems which turn up in this illness are caused by coinfections. XMRV simply doesn't carry a lot of information.

    Once you get past the original infection, you can expect a series of battles to correct all the subsequent cascade of failures. For the general public, this has considerable value, because it is very likely diseases with unknown etiology will be found to have identifiable origins, at least in CFS patients. This will benefit people who don't have CFS.

    A final caution, if you aren't in this for the long haul, you may not survive to become healthy. This illness is not for quitters.

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