Our Newly Ill Face Their First Holiday Season with ME/CFS
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...
Discuss the article on the Forums.

*New* Dr Bateman - XMRV Q&A

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jul 21, 2010.

  1. VillageLife

    VillageLife Senior Member

    United Kingdom
    I thought this needed it's own post!
    Some interesting Questions & answers on XMRV by Dr Bateman.

    Question: Why dont researchers use the Canadian case definition?
    Dr. Bateman: A group of well qualified CFS clinicians met in Canada to create a consensus document that would provide a better clinical working definition of CFS, rather than a restrictive research definition. A research definition, like the Fukuda paper, is intended to identify those who have CFS without any other confounding issues, so that research outcomes will be more clear. A clinical definition is designed to be more inclusive, enabling a provider to diagnose CFS based on a more comprehensive list of typical symptoms. The Canadian definition paper was published in 2003 in the Journal of Chronic Fatigue Syndrome. Unfortunately the JCFS was initially less available except to those who subscribed to the journal. Eventually the information became readily available online, but one must know about it and go looking for it to find it.

    So, my answer is that the Canadian definition is not perceived as a research case definition; it doesnt carry the sanction and clout of the CDC definition; and it is not as easily accessible to those researchers not already familiar with the field. I believe there is work going on currently to make the Canadian definition more adaptable to research and more accessible to clinicians generally.
    (Note: Dr. Leonard Jason of DePaul University and colleagues in Brussles and New York just published an article titled, The development of a revised CFS/ME case definition, in the American Journal of Biochemistry and Biotechnology at http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf.)

    Q: Should I get tested now by one of the labs selling XMRV tests? How reliable are the results given our current state of knowledge?
    Dr. Bateman: Certainly individuals can make any choice for themselves, if willing to spend the money and take a risk on the unknown. It is my opinion that most people should wait for more progress before ordering XMRV tests. Several reasons not to get tested include the following:
    The tests are not yet well defined in terms of sensitivity and specificity. Hopefully a good test will have a high true positive rate and low false positive rate.
    We dont understand clearly what role XMRV plays in the people who have a positive test.
    We dont have treatments that have been proven safe or effective in the CFS population.

    Q: What should I do if I test positive for XMRV?
    Dr. Bateman: Stay up to date with the literature and consult with a physician who understands both CFS and our current state of knowledge about XMRV. Volunteer to be part of well designed clinical drug trials. Get information from large established advocacy organizations, such as the CFIDS Association, who are doing their best to keep the CFS community aware of progress and the implications of each new bit of information.

    Q: Should XMRV positive patients be worried about sexual transmission?
    Dr. Bateman: Thats another good question. The answer is not known yet. So far it hasnt seemed like the presentation of CFS is typical for a disease that is sexually transmitted. But our ability to observe patterns of transmission could be obscured if only a subset of what we now call CFS have XMRV. Then the patterns of transmission might be hidden within the larger heterogeneous group. The question of sexual transmission will be answerable when we have a test that is reliable in both infected people (sensitive) and non-infected people (specific), and when we know how many infected people go on to develop a clinical illness.

    Q: What do you think about treating CFS with antivirals or antiretrovirals?
    Dr. Bateman: If we can establish the presence of XMRV, prove it is playing a role in CFS, and show that anti-retroviral drugs are reasonably safe and effective, then it will be a very exciting to have access to treatment options. As a physician who has seen patients suffer serious side effects from well-intended, proven and unproven treatments, I am very willing to wait for the evidence. I hope to play an early and pivotal role in this research as it becomes available.

    Q: What should I be telling my doctor about XMRV?
    Dr. Bateman: I encourage my patients to provide information about XMRV to all of their physicians, but it is up to the physician to pursue ongoing front-line scientific information. Sometimes it takes a long time for scientific information to become evidence-based clinical guidelines, but the better the research, the more compelling it will be for medical providers to become self-educated. Of note, OFFER has a half-day CME (continuing medical education) conference for medical providers coming up on Saturday, September 11, with a lecture on XMRV by Dr. Ila Singh of the University of Utah. Digital recordings will be available online after the conference at www.offerutah.org

    Q: Is XMRV related to specific CFS symptoms?
    Dr. Bateman: We dont know yet how many people who meet Fukuda CFS criteria, for example, will test positive for XMRV. So it is difficult to say how it relates to symptoms, since in the negative studies so far, sick people with many symptoms dont seem to be infected with XMRV (assuming the test results are accurate). In patients who are found to have XMRV infection, I suspect XMRV may be responsible, directly or indirectly, for many of the symptoms of CFS.
  2. WithHope


    I think the very last sentence of this Q and A is perhaps the most important and promising one. The more I read the more I sense that many leading ME/CFS experts think that XMRV may be a part of the jigsaw puzzle - but perhaps not the whole puzzle itself - I sense that Bateman is suggesting that indeed - it could be a very big part of the puzzle for those that are infected - I think this is hopeful re treatment.
  3. V99


    What if the NIH/FDA study used Fukuda only?
  4. biophile

    biophile Places I'd rather be.

    Good overall, but the first Q&A about research vs clinical definitions is odd, indirectly suggesting that the Canadian clinical criteria is more "inclusive" than the CDC research criteria. Eh? Then there's this:

    The exact opposite has occurred, thanks to the CDC. The vagueness of the CDC's (1994) criteria is a massive "confounding issue" itself and things have actually become less clear, more so with the introduction of the "Reeves" criteria which is even worse.

    Good question. I think we need multiple criteria to properly study the prevalence of XMRV.
  5. SOC

    SOC Senior Member

    There's always a difficulty with the difference between a clinical definition and a research definition. Or perhaps more accurately, in the way people end up using and applying them.

    I first ran into this when my MIL was sent by her neurologist to a famous ALS researcher for an assessment and possible inclusion in clinical research as there was no established treatment. Inclusion in a clinical study was the only hope for any kind of experimental treatment and the only other path -- no treatment -- is a miserable death. The famous researcher told my MIL that she didn't have ALS. Or that's what she heard. When he meant was that she wasn't a clean, classic case that he could use in a research study. Her case had unexplained features that might confuse the issue in a research study. Did she actually have ALS? Yes, but she had other issues, dementia among them, that while they don't exclude a diagnosis of ALS, might confuse the results of the research since they didn't know for certain the cause of the dementia.

    A clinical definition is what is used to determine what patients are diagnosed with a certain condition. They may also have other conditions, or some unusual features, but they still have the diagnosed features. My MIL had ALS and dementia, which runs strongly in her family, so she wasn't a research definition case.

    One problem arises when people, especially doctors, take the research definition as a clinical definition, as all-to-often happens when the CDC's "definitions" are used in a clinical setting. People who actually have the conditon go untreated because they have unusual features or "confounding conditions".

    In general, a research definition is tighter than a clinical definition. That is, it precludes patients who have the condition because their inclusion would confuse the research results. A clinical definition would include people who had, say ALS and dementia.

    The problem with ME/CFS is that the research definition, as presently given by the CDC, is so broad as to be ludicrous. It includes so many conditions that is confounding all on its own. The CCC, as I understand it, is more specific, but still allows for conditions that are not ideal for a research definition. It's all backwards from the norm for clinical vs research definitions.

    I think Dr Jason is working on using the CCC to identify an accurate research definition from the CCC. If it works out, we should have a research definition based on an accurate clinical definition, but somewhat more restrictive.

    If life were simple (Hah!), every ME/CFS patient would have XMRV (or something testable). Then the clinical definition would be, "Has XMRV" and the research definition would be, "Has XMRV, but not colon cancer (or something that would confuse the research)".

    The Fukuda definition might be seen (correctly or not) as better for research because of its "cleaness", while the CCC would be better for clinical work. I think Dr Bateman was trying to make this point in few words and, perhaps, with the assumption that we know more than we do about various kinds of definitions.

    Once again, we have the CDC to thank for totally screwing up research into ME/CFS. :rolleyes:
  6. Anika

    Anika Senior Member

    Jason's paper adapts Canadian for both research and clinical purposes

    I agree with you that the Canadian vs CDC created a b---ackwards situation on research vs clinical. CDC really botched the effort to operationalize Fukuda, which already had its problems. Canadian was a bit confusing, and clinical vs research.

    The recent thread on the Canadian definition includes some information on Jason & co's re-take on the Canadian Criteria. http://www.forums.aboutmecfs.org/sh...ensus-Criteria-for-CFS-ME&p=103420#post103420.
    It looks to me like it's a major improvement in making the Canadian Criteria work for both research and clinical purposes, and it actually takes the most restrictively selected group for the "research" definition, and then defines several less-restrictive categories, from clinical to remission.

    I hope there is some good discussion of this in the right circles. There has been a lot of patient support for having more research based on Canadian Criteria, but CC weren't ready for that - maybe now they are.
  7. Cort

    Cort Phoenix Rising Founder

    If its in the CFS community with any regularity they'll find it. The Fukuda definition has been used to find EBV and HHV6 and low blood volume and natural killer cell problems and RNase L abnormalities, metabolic dysfunction after exercise....and lots of other things - its been the research definition for years....its not great but I think XMRV's gotta be in there. I guess the big question is where Alter got his samples from? Did he get them from physicians who know what CFS is? I imagine that he did - I don't know who else has CFS blood samples other than the CDC and I have the feeling that he didn't get them from them (altho he may have picked up some in the last phase of his study).
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    The long-term problem with any criteria is in its application. It shouldn't matter that much if Alter et al used Fukuda or any other criteria if they one, found XMRV and two, accurately qualified their cohort. The real difficulty occurs when criteria are deliberately misused to provide a skewed result. I believe the CDC would have sufficiently bent even the CC to achieve a result they desired.

    Quite perversely, a problem with criteria that are more limiting or restrictive whether for a job interview or to define a disease, is they can more easily be manipulated to choose the 'right' applicants. Tighter criteria also enable the organisation using them to say 'Look, we are beyond reproach'. Thus there is less room to object. I saw this mechanism in operation time after time in the public service.
  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    PS. I agree with Cort.
  10. Cort

    Cort Phoenix Rising Founder

    Does anyone know where that Q and A is from and when it was first posted?
  11. Sasha

    Sasha Fine, thank you

    I just cut and pasted some of the text into google and it came up with an entry on the CAA's Facebook page, here.

    I'm glad they posted it, it's an interesting addition to the talk.
  12. jspotila

    jspotila Senior Member

    The Q&A was posted on the Association's FB page on July 21st. The questions were those most frequently asked during the Bateman/Racaniello webinar that Dr. Bateman could not answer due to technical problems. She kindly agreed to answer the questions in writing instead.

See more popular forum discussions.

Share This Page