Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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WPI adds 2 new Q&A

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by _Kim_, Oct 28, 2009.

  1. _Kim_

    _Kim_ Guest

    Who were the patients and healthy controls in the recent XMRV study published in Science?

    Every patient sample used in the study (taken from the nationwide WPI repository gathered from several regional physician practices) had a physician's diagnosis of CFS. To further validate the samples, the research team used the well-established CDC and Canadian Consensus Criteria for CFS in every case. The healthy controls were healthy people who came to a doctor's office for a routine sample or from DNA used in routine diagnostics.

    In order to meet legal human assurance requirements, identifiers for the control population are not available to the investigators. Nor was additional information on the patient samples used in this study. Age, sex, duration of illness, medical history and medication use have no impact on the identification of a new human retroviral pathogen.

    Would having other details about the patients impact the ability of others to replicate this work?

    No, but one must have the appropriate testing methods and tools to replicate. Retroviruses do not discriminate based on age, sex or any other characteristic listed. Additionally, because the healthy controls were zip code matched, as well as age and sex matched, no further information on the controls is needed.

    These CFS patients have a diagnosis of CFS as described by the Canadian Consensus and CDC definitions. There is nothing unique about these patients. In this research 67% of the study group had an active infectious retrovirus in their blood versus 3.75% of the healthy controls.

    The scientists who refereed this paper concluded that we met every scientific and clinical criterion with the rigor required by a journal with the highest standards in the world. Science and its referees understand the importance of the finding that a new human retrovirus is infectious and transmissible and highly associated with CFS.

    Future research will look at prevalence among population groups, transmissibility, interaction with medications, impact of the duration of a CFS diagnosis on the activity of XMRV, and a wide variety of other factors. We are all interested in these results, as well as treatments studies to determine best management of infections.

    This is a very serious public health concern: 3.75% of the healthy controls (which would translate to 10 million Americans) in this study were infected with a newly described retrovirus of unknown pathogenic potential.
  2. MEKoan

    MEKoan Senior Member


    Not an outbreak, not just Tahoe: "There is nothing unique about these patients."

    67% "active infectious"

  3. hvs

    hvs Senior Member

    Um, by the way, why would critics think that Peterson only sees patients from one geographic region? He's the "it" man; all kinds of folks lucky enough to have the where-with-all travel long distances to see him (yes, quite sick people, too).
  4. Aftermath

    Aftermath Guest

    Trying to Stay Reserved

    I'm trying to stay very reserved on XMRV, because in the 15 years I have been sick, there have been countless times where I thought "This is it!" (candida, HHV-6, CPn, mycoplasma,neurofeedback) only to be disappointed and back at square one.

    That being said, it's getting tougher by the day to keep my game face. Dr. Mikovits and the folks at WPI are not hedging any bets here. They are essentially staking their entire careers on this discovery with how positive they have been on XMRV. In particular, their actively advocating that the disease be renamed XAND puts their eggs pretty far into the basket that this is causal.

    How bad is it that a lot of us are hoping to have DNA reverse-transcribed from a retrovirus similar to AIDS integrated into our DNA? You know that you have hit rock bottom when this this is the case.
  5. Cort

    Cort Phoenix Rising Founder

    This is not a big deal - but they are trying to have it several ways here.

    In their article in science they said all the patients had RNase L dysregulation, very very low VO2 max, natural killer cell problems and I can't remember what else - I think they were very disabled. It's right there in the paper. And then why highlight the other samples came from 'outbreak' areas?

    It was never just Tahoe. Its been stated that Dr. Peterson is interested in one type of patient - so the question arose whether the tests were all on this kind of patient and not on other kinds of patients.

    Now they're saying "There is nothing unique about these patients." I'm not saying that many patients don't have all of the above but certainly not all of them do.

    (They later said that not all the patients had natural killer cell problems and RNase L. dysregulation.) It doesn't impact the science or the ultimate findings regarding XMRV - but it is rather sloppy - essentially a minor point in the whole realm of things. Oh well...

    On with the science.
  6. Reverse-transcribe my DNA, baby-baby! lololol

    Cracked me UP! I know!!! What kinda crazy AM I that I WANT to have this THING, rofl.

    Ok... gonna go look for my own 'game face'.

    Thanks for the laugh ( I am still laughing as I type).

  7. sloppy

    Nothing about this is 'minor' to me. So I hear ya, Cort. 'Sloppy' doesn't resonate well here. Anxious and tense about all this. Difficult not to be.
  8. Cort

    Cort Phoenix Rising Founder

    One thing people wanted to know was how long these people have been sick; ie if they'd been very sick for a long time then perhaps they'd had more opportunity to catch the virus or perhaps there symptoms had simply sunk so low that they were vulnerable to it. Yet they say that the duration of illness nor any other characteristics could affect retrovirus prevalence.

    We can see from the swine flu problems that viruses also can discriminate regards to age since severe infections are showing up more commonly in the young. They mentioned retroviruses rather than viruses but we know that retroviruses are much more common in gay males than elsewhere in the population.

    Essentially what they're saying is that this virus should be found in everybody who meets the CDC and CCD definition for chronic fatigue syndrome -that's the important thing and that

    While duration cannot affect retrovirus prevalence they think it may affect retrovirus activity.

    It's still a bit confusing to me right now
  9. leelaplay

    leelaplay member

    great eye for the prize bluebird on this and Cort's point!

    I've added aftermath's quote to my desktop, along with the Wodehouse quote Jerry S put in the quote of the day

    as it is my favourite for describing the onset of ME/CFS

  10. Robin

    Robin Guest

    From the Science paper:

    "Patients with CFS display abnormalities in immune system function, often including chronic activation of the innate immune system and a deficiency in
    natural killer cell activity (1, 2). A number of viruses, including ubiquitous herpesviruses and enteroviruses, have been implicated as possible environmental triggers of CFS (1). Patients with CFS often have active b herpesvirus infections, suggesting an underlying immune deficiency.

    The recent discovery of a gammaretrovirus, xenotropic murine leukemia virusrelated virus (XMRV), in the tumor tissue of a subset of prostate cancer patients prompted us to test whether XMRV might be associated with CFS. Both of these disorders, XMRV-positive prostate cancer and CFS, have been linked to alterations in the antiviral enzyme RNase L (35). Using the Whittemore Peterson Institutes (WPIs) national tissue repository, which contains samples from well-characterized cohorts of CFS patients we isolated nucleic acids from PBMCs and assayed the samples for XMRV gag sequences..."

    The language suggests that they used patients diagnosed clinically. I couldn't find anything about the VOX or RnaseL, just that it is "linked" to CFS. Maybe I missed something?

    There has been so much information flying about. I recall reading that the researchers selected the sicker patients (whether that was something documented or reported from someone who knows someone at WPI, I can't recall.) I don't know if severity is linked to NKC or other immunological findings.

    This is not necessarily true. Older people were exposed to the virus in earlier decades when it was rampant. Researchers are suggesting that because the young have NO antibodies, it is especially devastating.

    Huh? Well, that wouldn't be from a virus "discriminating", that would be an issue of population transmission...

    I think they wanted to show that the bug is in the CFS people, and then sort the other stuff out. Demographic information and controls ARE very important to rule out coincidences, like you suggest. But, the WPI insists that the only data necessary to control is geography. It makes sense, it makes me nervous, I'd like to see what plays out.
  11. Like Koan said - wow, they're talking about regular patients, not epidemic patients - this puts a new light on the study. Or at least it makes me think I have a much higher chance of having XMRV than I thought.

    I still leaning towards a genetic methylation cycle block as my possible cause though and still pursuing that angle treatment wise, as it is showing promise.

    That would be interesting if they found out that XMRV can cause methylation cycle blocks.
  12. Cort

    Cort Phoenix Rising Founder

    Its in the supplemental materials section:

    They did say characteristically extremely low VO2 max - so not all of them had that - but most probably did.

    This could be an important part which I missed before:
    They're saying that their diagnosis of CFS partially rested on these patients having those immunological abnormalities. I don't know if I do or don't have any of them. That means of diagnosing CFS is unique to them.

    That's the scary part to me personally. Now they're saying 'these are not unique patients' which is not exactly clear! but hopefully means they are representative of most ME/CFS patients - which I believe I fit into - that's the encouraging part for me! I hope thats true.

    The good thing is that we will certainly have an answer at some point. This isnt going to be one of those ME/CFS mysteries that just lingers on.
  13. cfs since 1998

    cfs since 1998

    No it's not. The published article does not say any of those things at all. The supplemental information says that the criteria included but was not limited to the conditions you mentioned.

    CFS patients do not have "more opportunity to catch the virus" than healthy people. If you exposed to it, you have it, and will never get rid of it. Unlike past viruses, we are talking positive versus negative rather than trying to establish small differences in the amount of a ubiquitous virus or titer levels. So I just do not buy the hypothesis of opportunistic infection.

    First, flu is not a retrovirus. Second, the discrimination you mentioned has to do with the severity of the infection, not whether the infection will occur or not. And the last sentence is a non sequitor, I have no idea how to respond to it.
  14. Martlet

    Martlet Senior Member

    Near St Louis, MO
    By reminding Cort that it has nothing to do with the virus being selective so much as that this lifestyle makes it easier to transmit.

    And we don't know if this holds true for XMRV or other retroviruses.
  15. mezombie

    mezombie Senior Member

    East Coast city, USA
    Additional info on samples not posted here yet

    I've been under the impression that Peterson's biobank was used in this study. Apparently that's not so. The WPI biobank was. It is separate from Peterson's and contains more recent samples.

    With thanks to Tate Mitchell, who posted this on Co-Cure today:


    The Whittemore Peterson Institute website has some new info up- two
    new Q&A's, and an interesting note about the samples from the
    'Science' XMRV study.


    Q- NEW Who were the patients and healthy controls in the recent XMRV
    study published in Science?

    Q- NEW Would having other details about the patients impact the
    ability of others to replicate this work?



    "Dr. Daniel Peterson understood the promise that a historical bio bank
    could bring to scientific understanding thus he began collecting and
    storing patient samples in the early 1980's. However, it is important
    to note that no samples from this historical bio bank were used in the
    Institute's XMRV studies."


    FAQs about the Whittemore Peterson Institute Bio Bank

    What is it? [view answer...]
    WPI repository is made up of over 8,000 well-characterized and coded samples.

    When was it created? [view answer...]
    All samples were collected from 2006-2009, under the WPI's research
    department with signed patient consent forms.

    Where did the samples come from for the XMRV study? [view answer...]
    The WPI repository samples came from patients who live in many
    different locations around the US. Physicians who contributed patient
    samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson,
    and Dr. Eric Gordon. Other individual patient samples came from
    individuals who became ill while living in California, Wisconsin,
    South Dakota, etc.

    How were the patients diagnosed? [view answer...]
    Patients were physician diagnosed using the Canadian Consensus
    criteria and the CDC criteria and after exclusion of other
    inflammatory and autoimmune diseases.

    Were any patients with lymphoma mentioned in the XMRV study? [view answer...]
    Blood samples from the WPI repository were chosen at random and there
    were no patients chosen with lymphoma or mention of lymphoma in this
    study. Another preliminary study was done at a later date that had
    nothing to do with the XMRV Science publication.

    What about Dr. Peterson's private repository? [view answer...]

    Dr. Peterson has a repository of samples from the original out break
    in Incline Village, Nevada which also includes longitudinal samples
    taken from patients from the 1980's through 2005. None of these
    samples were used in the XMRV study.
  16. Cort

    Cort Phoenix Rising Founder

    I talked to both Annette and Harvey Whittemore about this; they both said it applies to 'normal" ME/CFS patients; ie people who meet the 1994 CDC criteria and the Canadian Consensus Criteria.

    We should know VERY soon. Dr. Bateman said that both she and Dr. Klimas and others have their blood samples ready to go as soon as they get the test. They will be informally reporting on their results probably within weeks (!). We should know long before any studies come out. ;)
  17. cfs since 1998

    cfs since 1998

    Just for clarification, are you saying Drs. Bateman and Klimas are collecting blood from their patients and sending it to WPI for testing? Rather than trying to test it themselves I mean.
  18. anne

    anne Guest

    Cort, that is very exciting.
  19. Cort

    Cort Phoenix Rising Founder

    I'll bet VPIdx since she said they were just waiting for the test to come available. Dr. Bateman wasn't aware that the commercial test became available a day or two ago.
  20. PoetInSF

    PoetInSF Senior Member

    Some researchers have indicated that they need the patient details in order to reproduce WPI result. It seems to me that it'll be simpler if WPI released them rather than arguing that they don't need them.

    Does anybody know what percentage of CFS patients have RNase L dysregulation?

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