1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by KnightofZERO, Jul 1, 2010.

  1. KnightofZERO

    KnightofZERO

    Messages:
    69
    Likes:
    1
    Blood from a Stone


    Posted to the CAA website HERE

    Suzanne D. Vernon, PhD
    Scientific Director
    The CFIDS Association of America
    July 1, 2010


    Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the journal Retrovirology titled, “Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States.” Blood samples from people with CFS, matched controls and 41 healthy blood donors were tested for antibodies to XMRV using a western blot assay and for XMRV DNA using a nested PCR assay. Three independent laboratories, including the retrovirus lab at CDC, Blood Systems Research Institute (BSRI) and the Robert Koch-Institute lab tested coded samples. There is no doubt of the technical competence of these laboratories to conduct these assays to detect XMRV antibodies and DNA. So why wasn’t XMRV detected?

    If the rate of XMRV in the healthy blood supply is 0.1% (or 1 person out of 1000), then there is a slim chance of detecting XMRV DNA among 41 healthy blood donor samples. So, no surprise there.

    What about the CFS cases and controls? First, I would like to make a request of all authors of scientific papers – please provide a table that describes the subject and sample cohort! Combing back and forth in a paper to figure out who is who and what is what is frustrating! From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS.” Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.

    Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

    Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.

    References:
    Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Switzer WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A, Bannert N, Simmons G, Hendry RM, Falkenberg VR, Reeves WC, Heneine W. Retrovirology 1 July 2010.

    Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

    For more information about the CDC’s cohorts from the Wichita, Georgia and registry studies visit: http://www.cdc.gov/cfs/publications/surveillance.htm

    My comment: I am not sure what the significance of the different tubes is. However saying it is a study "designed not to detect XMRV" is a pretty strong allegation. Is there someone with a biology background who can comment on the tube significance? Also I am unsure if some of the survey studies referenced happened when Vernon was at the CDC (?) so if she can't make heads or tails of the cohorts they are using I doubt most other professional researchers can. Can someone confirm or deny this?
  2. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    Thanks for posting this as a separate thread. It isn't getting the attention it deserves.
  3. Greggory Blundell

    Greggory Blundell *****

    Messages:
    109
    Likes:
    0
    New Jersey, USA
    This is a great post! Very supportive!
  4. CBS

    CBS Senior Member

    Messages:
    1,362
    Likes:
    234
    Western US
    Thank you, Dr. Vernon!
  5. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    seconded!!
  6. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Third that and 4 paws up!
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Hoisted them on their own petard! Nice.... I'm trying to write this up- so good to hear from someone who knows something.

    I honestly can't believe she said this

    No CFS patient could say anything more damning! That's powerful stuff....I hope to God that she's right. (I was thinking it was all over again).

    (there was no love lost between her and the CDC when she left :))
  8. CBS

    CBS Senior Member

    Messages:
    1,362
    Likes:
    234
    Western US
    What Cort said!
  9. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    How can such a study ever pass peer review then?? I just don't get it. Don't they have reviewers that understand these things as well as Dr. Vernon does? I thought Retrovirology is a good paper?

    It's great to get such a clear statement by her.
  10. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    How indeed when the study process was really poorly designed, and executed, on purpose. Dr. Reeves who designed, supplied and wrote the paper has been removed from his position as head of CFS and replaced with Dr. Unger back in February. This study was sent out in March where it langished in no where vill until July 1st when it was accepted and published all in one day.????????????

    So I guess the 64 million dollar question is 'why publish a rubbish study by a guy who has been replaced on the eve of major positive papers being released'?

    That's what we are all here at 5-6 o'clock at night beating our heads against the proverbial wall until they are bloody, trying to figure out. (Medic, someone call a medic, grins)
  11. Ever Hopeful

    Ever Hopeful

    Messages:
    18
    Likes:
    0
    USA
    I was very pleased to see Dr. Vernon's response to this article. I attended a meeting a couple of years ago where she was a presenter and was very impressed with her. I was the last person (from the public) to speak with her privately after the meeting. I watched her patiently and compassionately speak with everyone who wanted a bit of her time. I found her to be a very genuine and caring individual in person - got very good "vibes" from her, so to speak.

    Thank You Dr. Vernon!!
  12. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    If this is true, then i have a good idea about the answer and more importantly i don't even care what the answer is.
    But i would like to be a little bit more sure that those studies will come.
  13. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Cort, why were you thinking it was all over? Honestly, I think that only such an approach by us can make it all over - when the CDC study is so lousy and sloppy. Surpsrisingly, Dr. Vernon said here exactly what I think: This study wanted not to find XMRV.
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,002
    Likes:
    3,081
    N. California


    YES. You can't find what you're determined not to.
  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Because other than what she identified I thought the study was solid....three independent labs, using some of the same tests as the WPI did...not finding anything....other than a fatal flaw I couldn't see how they screwed up. Yes the cohorts were poor but still to get no positives...that would take a basic flaw - like collecting the blood in tubes not designed to store pathogens...

    Honestly its hard to believe the study was done if that was the case....How do you make a mistake like that?

    Dr. Vernon's real point in my opinion is that there

    NEEDS TO BE A TRUE REPLICATION STUDY

    - that's what we should band around in my opinion - that's what we should be advocating for.
  16. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Speak for yourselves, it's nearly 1am here....and I can't put the blo**dy laptop down!!! [determined to stay awake :eek:]
  17. Dorothy

    Dorothy

    Messages:
    49
    Likes:
    0

    I don't see any reason why Dr. Vernon WOULDN'T be right.....she worked with the CDC for years and ought to know her way around blood tubes. I recently got my instructions and kit from the Solve CFS Bio Bank project, and they were very specific about using "sodium heparin (green top) tubes" (they were included in the kit). I'm sure Dr. Vernon has done her homework. I've never seen her criticise the CDC in such strong terms before, and she doesn't strike me as someone who'd dash off a poorly reasoned argument. I'm thrilled with her response......Thanks Dr. Vernon!!!
  18. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    !LOL! Bullybeef ain't it the truth and more than likely there won't be any more news until next week at the earliest. I just know if I stay on line long enough that something will jiggle loose and I'll say "Oh, so that what this is all about!" (grins)
  19. Sean

    Sean Senior Member

    Messages:
    1,179
    Likes:
    1,830
    Agree with that.
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,184
    Likes:
    5,182
    "designed not to detect XMRV"

    This is too strong imo.

    Is this part of a political game? The CAA think XMRV is working out, so want to be more aggressive in their approach to it?

    I preferred it when they presented themselves as being more detached from it all. I think that they should bang on about the Atler study not being published, but stay more cautious in their critiques of the other studies. If XMRV doesn't work out for us we don't want the CAA too contaminated by it - if it does work out, it won't matter to us how strident the CAA were in their critiques of the WPI's critics. There are now a couple of other positive studies - there's no way this can be brushed under the carpet without being properly examined. I think we can afford to hold back some of our attacks.

See more popular forum discussions.

Share This Page