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Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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Cheney Newsletter

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Nov 28, 2010.

  1. shannah

    shannah Senior Member

    I don't want to get anyone upset by posting the latest Cheney newsletter teaser. The links that are posted in the first part lead to information dated August 31st of this year so this is probably all information that we already know. Two of the links lead to exactly the same information. Not sure if this was an error or not.

    I think the inofrmation on the serology testing is new though. I don't think I remember seeing it before.

    The Cheney Research Newsletter No. 20

    In this issue, Dr. Cheney discusses recent advances in the testing of XMRV as well as overlapping diagnoses associated with CFS cases infected with XMRV including chronic lyme, mold related illness, fibromyalgia, irritable bowel syndrome, multiple chemical sensitivities and allergies to foods and inhalants. The latest results on XMRV testing on a well selected CFS consecutive cohort is discussed in detail and advice given as to how the newly available XMRV tests can be optimized and for whom and how to get the tests done as well as their costs.

    The overlapping illnesses connected with CFS cases who are also most often infected with XMRV are chronic lyme (26%) and mold-related illness (21%) in a CFS-only practice. Almost all such overlap cases are infected with XMRV suggesting that XMRV may be a common denominator for chronic lyme and mold-related illness who also meet the case definition for CFS. Whether chronic lyme and mold-related illness can exist independently from XMRV or even CFS is not known from these studies. What does appear to be the case is that CFS case overlap with these two diagnoses does appear to be almost universally infected with XMRV.

    In this issue:

    Detection of XMRV in well described and consecutive CFS cases

    Common overlap diagnoses in CFS cases

    The nuts and bolts of new XMRV testing

    Detection of XMRV in well described and consecutive CFS cases

    I have reviewed the recently returned serology data from VIP Dx on XMRV. Of the 22 CFS patients returned with serology results to date, 2 out of 3 or 67% were reported positive for serology that were negative earlier by PCR/culture using the LNCaP permissive cell line. The current positivity rate for 47 consecutive CFS cases at the Cheney Clinic using all available XMRV testing now stands at 83% and expected to go over 90% when the unreported cases still out are reported for serology.

    Of two non-CFS family members who tested PCR/culture negative and both were spouses of CFS cases, one was seropositive for XMRV and the other seronegative. This raises the successful detection result in non-CFS family members or exposure controls tested and reported to date to 60% (6 out of 10). This data argues strongly that XMRV is quite infectious within the family unit and perhaps as infections as the feline leukemia virus to which it is related (both are gammaretroviruses). The broader community of healthy controls infected with XMRV is yielding from 4-7% of the population in four published studies to date suggesting that the XMRV virus may be ......

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    Common overlap diagnoses in CFS cases
    I have recently evaluated the overlapping illnesses often associated with CFS including chronic lyme, mold elated illness, FM, MCS, IBS and allergies (both food and inhalants). To do this I used patient report questionnaires to help dissect out the important question of the frequency of these overlapping diagnoses in a CFS-only practice. Questionnaires lack some of the diagnostic precision of more detailed case definitions but the inherent biases already built into a CFS-only specialty practice would exist despite any improvement gained by using more accurate case definition discriminators such as exam and laboratory data, if they exist at all. The use of immune-related lab data will likely not help that much as I already examined this data and they overlap with almost all of these diagnoses so they do not serve as discriminators except in perhaps those with C4a's above 20,000 which is distinctly uncommon in my practice but I think is more common in mold related illness, especially after mold re-exposure. These overlap diagnoses are common in my CFS cohort and range from ......

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    The nuts and bolts of new XMRV testing

    There are now two tests for XMRV known as the XAND PCR/culture and XNDS serology tests from VIP Dx (www.vipdx.com) in Reno, NV. You can do both tests together for about $550 or about $700 for both separately. CFS patients need to do both initially but exposure controls or family members might want to only do serology for $250. For CFS cases, there is a non-overlapping chance of being negative on PCR/culture at about 25% or greater and about a 50% chance of being negative on serology but perhaps close to a 80-90% chance in our clinic of being positive if you do both (one or the other positive). If you are a CFS case that is negative for both, I would either repeat both tests every 3-6 months or do a flu vaccination and repeat only the PCR/culture test within a week but at least 72 hours after the vaccination (a so-called evoked test) and I would repeat the serology test four to six weeks after the vaccination. The best reason to do this evoked testing on negative cases is.....
  2. calzy

    calzy Senior Member

    Naples Florida
    :Sign giggle:haha... that was my first thought when I got that newsletter :Retro mad:
    irritated again at poor Dr. Cheney.
  3. Cort

    Cort Phoenix Rising Founder

    He knows how to put a good 'leader' out there, that's for sure. :)
  4. Esther12

    Esther12 Senior Member

    Some of these results seem a bit random to me.

    We're only getting tiny samples of data released - but it almost seems as if there's no correlation between being culture positive and sero postive. Surely that's a bit of a problem?

    but also - surely the WPI would be checking up on things like that? One of the things that worries me a bit about the WPI is that they've been so confident right from the start that I'd be a little worried they might not have lots of internal checks of their own data. I guess we're just going to have to wait for the BWG (they were meant to have reported two weeks ago! - We all know the sort of blinded testing that would quickly sort this out... how long can it take!)

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