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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Has the scientific process had a fair chance to work itself out with HGRV's?

Discussion in 'General ME/CFS News' started by markmc20001, Jun 3, 2011.


Has scientific process had a thorough chance to work itself out in HGRV research?

  1. No

    25 vote(s)
  2. Yes

    4 vote(s)
  3. Don't know, Not sure

    1 vote(s)
  4. No comment

    0 vote(s)
  1. markmc20001

    markmc20001 Guest

    For those of you who have watched the events unfold around HGRV's in CFS over the last year or so. Has the scientific process had a chance to fairly work itself through in regards to HGRV's? (especially in light of the most recent news of the "Science" journal requesting retraction of the paper on XMRV)
  2. Esther12

    Esther12 Senior Member

    Watching the process, I've been amazed at how inefficient and decentralised it has seemed.

    The first thing I wanted done was to have the WPI's ability to distinguish between CFS and healthy samples under independently blinded conditions. We had that sort of done with the BWG, but the numbers were so low we couldn't conclude anything from the result.

    It seems like we're still waiting for the Lipkin study to start doing this, and it will happen three years after the initial Science paper. It seems like a strange approach to me.
  3. Sasha

    Sasha Fine, thank you

    Interesting question! The answer's no in my view. That's why I'm putting so much effort into promoting the Vivint contest, in which WPI is in with a strong chance for $250,000. There'll be no resolution without continued research.

    I'd urge as many people as possible to create a signature (Settings tab next to the Log Out tab - then "Edit signature") about the Vivint contest. Feel free just to paste & copy mine.

    People do what they think is the norm - I'd like to see everyone on Phoenix Rising with a similar signature to establish the norm, and I'd like to see us all voting in the contest to get more research money.
  4. insearchof

    insearchof Senior Member


    I agree and support efforts like this one and helping assist fund private research.

    It is hard to sit on the sidelines and watch this play out, and contributing to assist WPI and other private research takes away from the feeling of helplessness.

    However, the WPIs wont be able to survive on private funding alone and their ability to secure grants will further be diminished if the DSM 5 proposals go through.

    The Complex Somatic Symptom Disorder diagnostic category being proposed for the new psych diagnostic manual (DSM 5) is so broadly drafted, that it will catch many of us with ME CFS FMS XMRV. In fact, it will apply to all medical illnesses, but our illnesses are very vulnerable because of the drafting.

    So in addition to those diagnoses, we may also get a psychiatric diagnosis - bolted on to our medical records by doctors who do not understand our illnesses or who do not wish to!. :(

    If that took place, then there is a chance that secondary diagnosis could become prominent in the eyes of many treating doctors and we would have a harder time accessing appropriate medical testing and care. :(

    Further, I would expect a large education campaign by the psych lobby and I am sure that this would just cement existing views that these illnesses are largely psychosomatic.

    If and when that happens, our illness may well become entrenched in the mentality of the medical profession and the government as a somatoform psych illness. If that happens serious research will beging to dry up. Perhaps the government grants committees would be even less inclined than they are presently, to allocate funds for biomedical research to these illnesses.

    This is just a couple of the potential consequences of these proposals. Others can be found here:!

    If you dont want to see this happen, then please put an hour of your time aside and put in a short submission.

    The proposals will directly affect all Americans - but as the DSMs are used to varying degrees outside the USA they will impact us all. And as we know, other parts of the world look to developments taking place in the USA.

    There is an overview of the topic and a list of issues to help you write one here:!
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

    The "process" has proceeded, as it should. Lombardi et al had an hypothesis, which was - " XMRV is present in the blood of people with CFS", the hypothesis was tested, Lombardi et al published, other groups tested the hypothesis - no one but Lombardi et al can find XMRV in any human blood thus the hypothesis effectively falls because Lombardi et al is not reproducible. That the editors of Science suggested retraction of Lombardi et al, is part of the process because in the course of testing the hypothesis serious doubts have been raised about the Lombardi et al findings. The arguments about 'true replication' are nonsense, and if followed would require repeating experimentation with known contaminants. The BWG and Lipkin studies may reveal something different but the probability is strongly against XMRV being detectable in human blood.

    As to whether Gammaretroviruses are causative of disease in humans, that is a much larger question which will no doubt exercise research attention for years to come, at this point though there is no obvious reason to focus on any specific viral agent as a having a role in M.E/CFS. Given XMRV seems to sit in primates quite happily without doing anything very much GRVs might be thought of as not demanding urgent attention.

  6. Wonko

    Wonko Senior Member

    The other side.
    known by who? what are the contaminants in the WPI's CFS research? please state your evidence for this assertion.
  7. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    I agree with Esther12. There was no point in doing a blinded study with only 4 samples.

    There was no point in publishing negative papers using no controls at all, or samples screened to remove people who had any sign of viral infection.

    There was no point in not trying to replicate Lombardi et al.

    There is no point in so long delaying an independently-blinded study with an appropriate number of samples, where WPI gets a chance to try to replicate its own work.

    At this point, journals should go ahead and publish any positive papers which have been submitted, even if they think they are junk, because they have already published negative papers that are junk.

    The way science is done is to look at the data, positive and negative, and figure out why it differs. Not to hold up studies because it bothers you that they differ. And not to come to instant conclusions,
    whether it's "Oh! CFS is definitely not caused by a retrovirus! we know it to be associated to _____" (doesn't matter what, even if it's biomedical--good science always allows for new data),
    or "Yeah! We found the cause!" (maybe not; it's a good model, but what in the body differs between people who get this MLV-associated disease and that MLV-associated disease? )

    We still have many more questions than answers, and yet many (probably most) deem the case closed. Contamination only partially explains results in 1 labs (Shin/Singh; Singh says prostate cancer results are unaffected), and does not explain positive results in 2-4 labs (Lombardi, Lo, Cleveland Clinic, NCI?), and does not explain negative results in 1 lab (I forgot which negative study found contamination), and does not explain how all studies who were able to find XMRV (or MLVs) at all, find similar low prevalance in the healthy population (despite having completely different contamination routes, where contamination was found to be present). So contamination does not close the case.
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    IVI, the Japanese blood safety group found XMRV in their blood supply, in a similar low prevalence to Lombardi et al. and to the positive prostate cancer studies
  9. Francelle

    Francelle Senior Member

    Victoria, Australia
  10. insearchof

    insearchof Senior Member

    Thanks Francelle....

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