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Khaly's latest: CAA-XMRV: Tell Me What It Means To ME?

Discussion in 'General ME/CFS News' started by shrewsbury, Mar 2, 2010.

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    Not necessary to keep up with the details, Tina. :)

    But advocacy is always needed.
  2. Cort

    Cort Phoenix Rising Founder

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    I think Dr. Vernon may have seen potential problems with one study and maybe different possible problems with another and perhaps a few different other possible problems but after three studies for all of them to be wrong you'd have to have every issue or most issues be problematic and that's probably becoming a bit of a statistical problem. What are the odds that every study just happens to be doing the wrong thing for XMRV?

    She also seemed to think that aside from the old blood and cohort that they used really stellar techniques- better than the first study.

    Its pretty clear she doesn't buy the 'you have the culture first' argument or the viral loads are too low for their methods argument.

    (I must say I'm kind of with usedtobe - this stuff is burning me out. I need an XMRV break. )
  3. starryeyes

    starryeyes Senior Member

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    If the cohort didn't have CFS in the first place then these labs are just spinning their wheels. If you don't apply the Canadian Definition then you probably don't have PWC in your cohort. They can come up with 10,000 negative studies for XMRV in what they call "CFS" and still have done no scientific analysis of actual PWC. Meanwhile more and more people here and elsewhere on the web who actually do have CFS are testing positive for XMRV.

    Some PWC don't want to believe that CFS is caused by a retrovirus. Some are scared of having a retrovirus and some are scared they don't have a retrovirus.
  4. Gerwyn

    Gerwyn Guest

    British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs [but] with psychiatric symptoms as common associated features. [12]

    Cort--this quote comes from one of the Oxford four a co-author A.S David

    If this does does not exclude patients with ME/CFS I dont know what does.

    How do you tell the fatigue associated with clinical depression and ME.

    To qualify for a diagnosis of CFS/ME our UK governmen's guidelines state that there must be fatigue which gets worse with mental or physical effort

    .Patients with depression must be excluded.Ergo the Oxford criterea does not diagnose ME?CFS

    The 150 odd patients with chronic fatigue in the dutch study(The clinician involved has gone on record as saying that this is the only symptom he uses) were all diagnosed in 1991 some two months after Oxford were published

    Completely ignoring Holmes.What did this guy use before? how did he diagnose so many in such a short time.?

    The possibility of retrospective diagnosis needs to be investigated.

    A number of people have commmented on the characteristics of the patients in the Dutch study I dont know where this info came from because there is no info in the Dutch study.

    The WPI took a very long time to produce its work.these studies have all been cobbled together in 51 DAYS

    The trialists clearly did nor read the science paper and used techniques contrary to published science.

    Contrary to Kurts opinion PCR alone cannot locate integrated Viruses This is vwhy the modern culture PCR technique was developed.


    The dutch study did not use this method despite copious quantities quantities of published evidence.


    I am sure they are competent but in this case they did not do their homework so vital to a study of this kind

    .why because they were probably in too much of a rush
  5. starryeyes

    starryeyes Senior Member

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    Yeah Gerwyn, they're in too much of a rush to prove the WPI and the Cleveland Clinic and the Institute for Cancer are all wrong about XMRV in us.

    Hey, I like the way you're spacing your sentences Gerwyn. That's way easier for me to read and comprehend. Thank you.
  6. jspotila

    jspotila Senior Member

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    Neither Dr. Vernon nor the Association has changed perspective on the critical need for replication studies, as well as validation studies. From Dr. Vernon's article, bold added by me:

  7. jspotila

    jspotila Senior Member

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  8. jspotila

    jspotila Senior Member

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    The cohort definition is only one part of any study design. As we've seen in the three negative studies, methods are also a huge component. I think if you look at everything the Association has published on these studies, it is clear that none of them are replication studies and none of them are impeccable.
  9. Gerwyn

    Gerwyn Guest

    Has anyone got any access to dr Vernon directly or indirectly

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