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Article: A Light in the Darkness: Good News Ahead for XMRV?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 26, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Esther12

    Esther12 Senior Member

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    Hey Cort.

    As a general comment about your articles: do you know how we could get Google to count them as news? Some blogs count as news, and this site often comes quite high in google searches, but the 'news' section of Google never picks anything up. I'm not sure if you have to register, or if the articles don't get enough hits...

    Just found this: http://www.google.com/support/news_pub/bin/answer.py?hl=en&answer=40787

    I thought I'd mention it.

    re this article: I've no idea how positive this is for the XMRV link holding up, but it's certainly reassuring to remember that there are still lots of serious studies going on and people commited to getting to the bottom of it all.
  3. gracenote

    gracenote All shall be well . . .

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    Thank you Cort. Great to read some hopeful news again. And thank you CBS for letting us know about your participation in these two new XMRV studies.
  4. George

    George Guest

    excellent to hear some good news! wag, wag, wag, wag, BARK! Thanks Cort and CBS. (big sloppy dog licks, grin)

    PS I was wondering what happened to the Dr. Light study on ion channels I kept looking for it and couldn't figure out why it wasn't published yet. Guess they got a better offer. (grins)
  5. It was really good to read about this, especially since I am lucky enough to be a part of the study. I have been a patient of Dr. Bateman since the early 90's and appreciate the opportunity to participate with such an esteemed group of doctors. It IS great news!
  6. parvofighter

    parvofighter Senior Member

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    Love it!

    Cort, Thanks for another great synopsis on some very exciting developments in XMRV research. As you said,
    Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile.

    Yowza!
    And a very appreciative thanks to CBS for so kindly sharing so much illuminating material on this study.

    You made my night!

    Parvo.:Retro smile:
  7. gracenote

    gracenote All shall be well . . .

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    debbiebradshaw,

    Welcome. I hope you come back and share with us as you go along.
  8. Koan

    Koan Be the change.

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    Good news! Thanks much to Cort and all who are taking part in this study.

    Whata we want, blood? Yes please.
  9. Cloud

    Cloud Guest

    I knew something good was going to come from Utah!
  10. julius

    julius Watchoo lookin' at?

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    I've just heard of another researcher who is finishing up one XMRV study and is currently applying for funding for further research. I think the same assumptions apply to this as well. Sorry I can't give more details.
  11. JT1024

    JT1024 Senior Member

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    I'm not sure how to express my concern but...

    I work in a lab currently to pay my bills. Unfortunately, the people performing testing in the US may or may not be qualified or appropriately supervised to perform the testing. One would think that such a role requires licensure but that is not the case in most states in the US. In fact, the hospital associations and the doctors (AMA) fought against licensure requirements due to conflicting interests. Licensure would require higher standards and higher pay.

    You doctor, nurse, pharmacist, physical therapist, plumber, electrician, general contractor, nail technician, etc are all required to be licensed in most states. That is NOT the case with laboratory personnel. You really don't want to know that the people performing testing may have nothing more than a high school diploma and OJT (on the job training).

    While that may be fine for some exceptionally bright people working as techs, it may not be the case where you live and have your lab work performed. Back in the 80's when some women died after having Pap smears read incorrectly, there were remedies made for cytotechnologists where they were limited in the number of slides they could view in a certain time period. The limitations placed on cytotechnologists are NOT placed on the laboratory techs performing the vast majority of work in the US. It can be an assembly line process or batch process where specimens that should be rejected are not, etc.

    The tech performing your lab work may have no college background and may not catch something extremely significant in your blood work due to pure ignorance. Due to cost cutting measures, some hospitals will take whoever they can get to perform lab work. They just want it done. Hospitals employ people just to certify physicians credentials. Who is paying attention all the other people employed at the hospitals?

    I left the lab years ago but only returned to pay bills after major personal trauma. I hate what I see. Unfortunately, many/most in healthcare turn a blind eye to issues surrounding diagnostic testing. Some diagnostic testing has been pushed toward the bedside and while that may seem to be a "good thing".... believe me...it is NOT. Most nurses as well as most others in healthcare and outside have no idea what is required to provide top quality laboratory services.

    If you have any doubt about any results your receive, QUESTION!

    Don't want to rain on this thread's parade but I'm well aware of poor results that can come out of MANY labs due to pre-analytical issues (specimen drawn at wrong time, specimen drawn in wrong tube, specimen not properly handled (needed to be drawn in a pre-chilled tube, drawn , place on ice, centrifuged in a refrigerated centrifuge, etc. etc ) in addition to basic testing procedures.

    I'll be interested to see what comes of this study. In the meantime, if you ever question a lab result, don't hesitate to have it repeated!

    Just my two cents... JT

    Just wanted to add that many labs are run well and the techs working in them are dedicated scientists. I've worked in great labs and a few that were/are substandard. Given that I want the best for patients as well as my family and friends, it disturbs me greatly when I see poor performance and neglect. Since labs are generally out of the public eye, quality and safety initiatives may not be a top consideration unless the hospital or laboratory's management makes it one.
  12. parvofighter

    parvofighter Senior Member

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    Thanks JT!

    JT, I really enjoyed your detailed post, and several themes really resonated for me.

    Firstly, your last words:
    This can't be emphasized enough. So many horror stories in our community of misdiagnoses, false negatives, etc. That's partly why I've been gratified to see VIPDx state explicitly that they MAY have false negatives for XMRV. They've really helped me to do my due diligence, by being very honest that their test is not yet 100% accurate. If you're positive, they're pretty sure you've got XAND. But if you're negative... may need to shoot at the basket another time. And that's OK with me. They also have suggested that patients only re-test in 3-6 months. Forums like this help hugely when patients choose to post their lab results - and then share what they have learned about interpretation. Not the same as an expert interpretation. Altho sometimes better!

    But the point you made about pre-analytical issues is equally vital. JT said this:
    Think back now to those lovely 20-year old tubes of blood that the British Medical Journal used for their XMRV/CFS study. Were the pre-analytical methods as robust then as they are now? Makes you wonder what they're smoking, huh?

    Thanks for your two cents JT - really enjoyed them! Keep posting - we have a great hunger for lab analysis!

    And bones. And blood.

    Parvo:Retro smile:
  13. Cort

    Cort Phoenix Rising Founder

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    One of the things that was encouraging to me about this is the fact that ARUP is involved and they appear to be being very careful - that stopwatch detail kind of said it all. Does anyone know why seconds matter if something like this? If they do then you can see how the 'quickie' studies might have gone wrong.

    We don't know how many people tested positive in the first study, we can just infer that enough did for the study to be expanded - and for a certain level of excitement (people working around the clock) - to be present. Even 10% given their more stringent guidelines (one sample per-person, strong bans on the test) would be huge.

    It's also very encouraging that Dr. Bateman is taking part in the study because she has already has data on these patients and to hopefully be able to get some idea of which types of patients are infected, which types of patients have higher viral loads, etc.

    How interesting that these two efforts, the WPI and the FFC with Dr. Bateman, are coming from Nevada and Utah - two, little states sitting next to each other - in the big (and mostly empty) Intermountain West.
  14. Koan

    Koan Be the change.

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    JT1024

    I find this really shocking! Would you consider writing a short article (I think you could rework/flesh out your post into a very good article) and submit it for publication in as many places as you can think of? I would use a nom de plume, of course, given that it's your livelihood. But, I think most people have no idea about this!

    Please do consider it!

    Thank you so much for posting it here!

    Koan
  15. Kelly

    Kelly

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    While it is very exciting to focus in on the XMRV studies please do not see them as a miracle at this time. Right now it has yet to be scientifically proven that XMRV is pathogenic in any disease not just CFS. Good science takes time regardless of the results. Asking to be tested at this time is a waste of money - to be blunt - even if you test positive what does it mean? At this time very little. It's not diagnostic of any disease and it does not yet indicate a specific treatment regime. Hopefully that will change. Want that to change? Donate. Money = research = more knowledge.

    Also remember, negative studies sometimes give researchers as much information as positive ones. It is all a matter of testing each hypothesis one variable at a time. It should be noted that XMRV is not showing up in prostate cancer patients in Europe either, but no one is claiming that a few studies include all the knowledge there is to know. In many ways the mind/body focus has shortchanged virology in all areas of medicine not just in CFS.

    Because modern scientists know that many pathogens (viruses, bacteria, toxins) or combinations of pathogens can cause the same disease it would be interesting if CFS patients who test negative for XMRV were also tested for say EBV, HHV-6A and CMV. Or even HERV at the same time. More bang for the buck.

    It is good news that Dr. Goff is working with Dr. Montoya. Dr. Goff has been quite critical of the spat between the WPI and the Wessely school researchers. His take as a scientist is "get over it, exchange samples and move forward." And he is right. Solid researchers without a horse in the race are impatient with all the grand standing and declarations on either side saying they have settled the issue once and for all. There is a great deal more to learn about the role, if any, of XMRV in disease. There is also a great deal more to be learned about the neuroimmune disease CFS and other similar diseases with common core signs and symptoms.
  16. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Cort,
    I wonder if healthy normal controls were also tested in round one, along with the ~36 patients. Assume so for the sake of argument. Then it's possible, I think, that round one yielded like 2% positives in the normals, and 5% positives in the patients. Yet the difference might not be statistically significant. So they would open round two with a larger sample size (yielding greater statistical power). And maybe then they would find that a few CFSers are positive, but normals are just as likely to be positive.

    I sure hope that is not the case. I hope they find it is the cause.
  17. julius

    julius Watchoo lookin' at?

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    Eric, if that were the case, would they ramp the whole thing up the way they seem to have, or would they be more likely to just increase the number of subjects, but not change it in so many other ways.

    Welcome back.
  18. Cort

    Cort Phoenix Rising Founder

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    That's a good question, Eric. We don't know anything about the percentage of positive patients - nor do I know if the controls were tested. My guess is that they weren't but I don't know. The patients from the first study have all gotten their results - it would be nice of some of them checked in.

    My guess is that they're adding more patients and working harder on the diagnostic tests because they found something. The fact that they're confident about the one sample/one patient protocol is encouraging. It sounds like they're feeling good about what they have; that they're getting a handle on this - which is obviously good news.

    ARUP is providing manpower - an administrator to work with Dr. Bateman - plus facility space plus the techs and all for the draws but they're not directly putting alot of money in this - they're interested - it sounds like they'd love to get a good diagnostic test out there - but they're not in full bore yet.
  19. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Cool info. Julius, what changes do you mean? Did they add in more assays?

    Working around the clock, eh - that does sound interesting.

    Hope abideth. I kind of wish Kerr/Gow had used a plain old Western blot instead of the unusual serology method they used (involving pseudotypes). Properly speaking it's silly for me to comment on it. I'm not familiar with the technique, and basically skipped that part of their paper. All I can say is there are about 1000x more papers that use Westerns, or anyway a lot more (in bacteriology, at least). I'm left wondering whether their assay might be a bit more complex, and thus, that much more fragile. I should emphasize the word wondering - I don't know if this is really the case or not.

    During my mentored labwork, I had no trouble with Westerns. And that's saying something. I had a lot of trouble with almost everything else and did not exactly distinguish myself.
  20. julius

    julius Watchoo lookin' at?

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    Without going through the whole article again, it seemed to me that they were not simply adding more subjects, but getting in more experts and techs, making the whole process a lot more streamlined and stopwatchy (sorry for the technical jargon :tongue:).

    The budget for this must be quite a bit higher than if they were just to do everything the same, but just add more subjects. I thought maybe this indicates bigger expectations than just clearing up a sample size question.

    I don't know if this makes my question any more clear.

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