Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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XMRV Study No. 4

Discussion in 'XMRV Research and Replication Studies' started by Orla, Feb 25, 2010.

  1. JillBohr

    JillBohr Senior Member

    Columbus, OH
    Correct me if I am wrong but I thought the WPI tested XMRV using white blood cells samples. The UK and the Netherlands said they used peripheral blood samples but did they sort out the white from the red blood samples.
  2. Gerwyn

    Gerwyn Guest

    This is what the Uk's chief medical officer has to say about the oxford criterea in fact he quotes one of the critereas creators

    erely critisized by chief medical officer of the UK

    This is the extract from the CMA,s report

    Oxford criteria’[10] are used. These are even more broadly inclusive of a heterogeneous population than the definition of CFS by the US Centers for Disease Control and Prevention previously referred to.[11] Indeed, one of the co-authors of the ‘Oxford’ criteria has described them as follows:

    “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.”

    note the absence of neurological signs and common psychiatric symptoms And he is a co author!!!! No patients with ME no virus---Simple
  3. sunnyslumber

    sunnyslumber Guest

    Well if they would LIE in a scientific journal I think they would use crappy testing that would presumably fail in any case. We know the Oxford Criteria is terrible but even so that would just mean there would be 70ish controls then (the Oxford People and the actual Controls) ...

    At least one or two of those should be positive. So in what part iis the testing crappy?... Not enough DNA? Bad PCR? Samples frozen and thawed in a really reckless manner? Can anyone who has read the article answer?
  4. natasa778

    natasa778 Senior Member

    that is the crux of it isn't it, they shouldn't conclude that their results show "XMRV is not associated with CFS" but rather "that their results show that XMRV does not infect humans at all".

    That is the only conclusion that can be reached by IC and this Dutch study, as well as the Kerr one considering that their serology was not xmrv-specific although they hit on some positives there. And that makes all three of those groups look rather stupid. And they don't even realise it.
  5. sunnyslumber

    sunnyslumber Guest

    Jill if they didn't then they are real idiots. If they fouled the test it was probably through either some aspect of their PCR or the thawing the frozen cells.
  6. fingers

    fingers Senior Member

    SW Endland
    I can sort of see what you're saying AK, but to reduce to the absurd, if you take a random sample, then apply a random test, you get random results.

    If you take a controlled sample and apply a random test, you also get random results.

    However, if you tajke a random sample and apply a specific, validated test, then any results you get are valid, i.e. you know who is positive and who is not.

    Gotta get the test right first, which is why I say the selection is irrelevant until you do.
  7. Jimk


    Cleveland, Ohio
    I know that there can indeed be political motivations involved, but the approaches we've seen yielding negative results are common ones in medical science. They rely on some simplistic assumptions about the organism involved and on the tests being used, but these are common assumptions for a "first cut" in new areas. They are the kind of thing that can be gotten out quickly after the publication of big study such as that in Science which runs counter to prevailing views.

    Scientists who are familiar with, or who have developed themselves, sensitive PCR tests and used them in research, tend to assume that if the test is valid it will detect the signal of the organism if it's present, and a negative result says the organism is not present. This is a somewhat simplistic orientation from a kind of faith in the precision of the test Simplistic because: PCR tests are highly sensitive, but also highly specific, i.e. they pick up only the molecules of the specific primers being used; organisms put out different proteins during different life phases such that particular proteins may be in short supply for the primer being used; the tissue being tested may be a poor reservoir for the organism; and so on.

    All this is separate from the differences in diagnostic criteria used-- and I agree with others that WPI was not clear enough in the original publication on this-- a difficult thing anyway for CFS/ME, especially country to country.

    As far as I can tell, all of the studies scientists, including WPI, have tended to overstate the implications of their results either in the publications themselves or in interviews after publication. The most accurate statements from the European studies to date would be "Using our own methodology we failed to detect XMRV in ME patients selected by "x" criteria." Yet all have gone further in describing the implications of their results. WPI could have more greatly emphasized the importance of their findings being replicated especially given the extraordinary numbers they found. They also could have made it clearer in the Science study, as Mikovits has in subsequent lectures, they went to great lengths to insure that they obtained adequate levels of detectable proteins. These procedures and the reasons for them were not entirely clear to me in the original publication.

    All of the hashing out of methodology and so on will take time. Clearly the kind of quick-and-simplistic studies that have been put together as the first response (the three European studies) are pretty much the norm in this kind of thing, and the studies using the more complex methodology WPI used in the original study will simply take longer to produce. The good news is that they are in process. It is not being swept under the rug. The bad news is that a lot of us with CFS/ME, have gotten taken up in the scale of the WPI findings as an indicator of the validity of their findings. Effect size does not make for validity, but it sure makes for hope.

    I hate the waiting as much as anyone. I'm not worried about the build up of bad PR though, because there are too many people looking at this at this point, and there is so much going on behind the scenes that truth will out, one way or the other.
  8. sunnyslumber

    sunnyslumber Guest

    Hey well thought-out post. I think I am one of those who was extremely expressed by the scale of the WPI findings so maybe I fall in your category. I think however that the finding of a retrovirus responsive to glucocorticoid in CFS/ME patients makes so much intuitive sense for people who have gone over any large number of studies on (Fukuda/Canadian) CFS and ME. It just fits so well it is hard to believe this intuitive and satisfying solution wouldn't be right. A lot of solutions in research aren't really all that satisfying and when they are it is really a pleasure. ... I guess the whole "Nature is Subtle" thing.
  9. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    News Headlines: "Virus Unlikely to Cause Chronic Fatigue Syndrome"

    Some of the headlines are just saying the new study "casts doubt" on link Between Chronic Fatigue Syndrome and human retrovirus XMRV, but some are saying "Virus Unlikely to Cause Chronic Fatigue Syndrome," including Yahoo News and MedicineNet.

    Virus Unlikely to Cause Chronic Fatigue Syndrome

    A new study adds to evidence that chronic fatigue syndrome doesn't have anything to do with xenotropic murine leukemia virus-related virus (XMRV), but the researchers point out that there's a caveat regarding American patients.

    "Although our patient group was relatively small and we cannot formally rule out a role of XMRV, our data cast doubt on the claim that this virus is associated with chronic fatigue syndrome in the majority of patients," the researchers report in the Feb. 26 online edition of the BMJ.

    No one knows what causes chronic fatigue syndrome, which is thought to affect millions of people around the world. But a recent U.S. study found signs of XMRV in two-thirds of patients with the condition.

    However, other studies, including this most recent one, suggest that there's no connection between the virus and chronic fatigue syndrome.

    In the new study, researchers from Radboud University Nijmegen Medical Center in the Netherlands examined DNA from 32 Dutch patients with chronic fatigue syndrome and 43 healthy people.

    The researchers found no evidence of the virus in either group.

    The reasons for the findings in the study of the American patients are unclear, but in a commentary that accompanies the new report, researchers from Imperial College and King's College London said it's possible that the virus may be one of several linked to an outbreak of chronic fatigue syndrome in the United States in the mid-1980s.

    "The current debate will still bring critical attention to the causes of chronic fatigue syndrome, and XMRV may turn out to be important in the pathogenesis of other diseases," the editorialists concluded.

    More information: The U.S. Centers for Disease Control and Prevention has more on chronic fatigue syndrome.
  10. fingers

    fingers Senior Member

    SW Endland
    ......or that the testing is different. I can't wait to see who ends up with the egg on their face (maybe me!!):Retro wink:
  11. Gerwyn

    Gerwyn Guest

    patients without ME dont have xmrv shock horror
  12. sunnyslumber

    sunnyslumber Guest

    not to be mean, but do any of you ever get the urge to yell "CRUCIO!" at Wessely? ^_^ That guy has done more to slow down research. Who knows how many people are dead because of it, but it almost certainly is not 0.
  13. Gerwyn

    Gerwyn Guest

    I know that virus spends most of its time in state A in that state it is DNA

    Rarely it is in state B in that state it is RNA

    How am i going to find this virus

    I know it's obvious really I,ll look for RNA in cells that have been deep frozen for i5 years Iknow they are viable for 2 years

    so that should be fine then

    A real no brainer!
  14. dannybex

    dannybex Senior Member

    This is what I don't get...

    Perhaps I'm completely missing your point, but isn't the opposite true -- that (extrapolating from the Science study) more healthy people were found to have XMRV than people with CFS (or ME)?

    Cheney mentioned 10 million healthy folks compared with 1 million PWC's in his talk with Mikovits...didn't he?

    I don't get it. Seems like there must be other factors involved besides just XMRV...?


  15. Cort

    Cort Phoenix Rising Founder

    And then there's this. I had heard that VIP Dx shut down because they couldn't find the virus anymore -which suggested that it was a contaminant and that the contamination had been cleared up; ie no more XMRV. So I asked them about that and this is what they said.

    Of course we have to bear in mind that one laboratory is finding XMRV all the time: that's VIP Dx

  16. Mithriel

    Mithriel Senior Member

    McClure says

    This would be the Incline Village outbreak which lead to the CDC discovering the "new disease" CFS? If what she says is true it is only proof that people have diluted the original illness until it is meaningless.

    I am getting tired of people saying that Mikovitz did not give any details of her patients or only released it at conferences. It is standard procedure at Science that that sort of detail is not put into the paper but is made available online. The weasels are just plain lying about it or they are very ignorant. I got to the supplementary materials by two mouse clicks from their references. They couldn't manage that!

    It seems detailed enough to me.

    The samples were unblinded at Christmas and she discovered that the patients came form outside the US as well. I believe they were unblinded because she said she would tell all the participants what their status was.

    There follows as much detail about the testing procedure as is given in any of the other papers.

    The exclusion of "proven organic brain disease" in the Oxford criteria means that anyone with a neurological sign on examination, such as the romberg, any abnormality on the usual neurological testing or any lesions in an MRI is excluded. Many people with ME have these signs so it is perfectly possible for a study to be done that does not contain a single person with ME.

    It is difficult for those from the US to understand exactly what it is like here. Words are used almost like code so that ordinary people think it means one thing but it actually means another. Excluding organic illness is taken as the common sense thing that patients who turn out to have, say, coeliac disease won't be included as having CFS, but they mean it literally.

    They have a second weapon. Typically, in this editorial they argue against a single virus being the cause because of the "heterogeniety" of the illness, yet they are the ones who insist on treating it as a single illness, somatisation with a shared cause and CBT and GET for everyone. They continually use something if it helps them and deny it if that helps them.

    I am disgusted with Charles Shepherd. He should know better. I am not convinced that XMRV is the answer in ME, I feel that continuing enteroviral infection could account for all the symptoms but XMRV needs investigated, properly and scientifically not these travesties.

  17. sunnyslumber

    sunnyslumber Guest

    Hey Dan, no worries over that at least. Probably the majority of infectious agents only cause disease in a minority of people who are carriers. There are many many people infection with Mycobacterium that don't get Tuberculosis. Also even with HIV there is a significant portion of carriers who never get sick. That part makes perfect sense ... some of us just have bad genetics and/or bad luck. TK!
  18. sunnyslumber

    sunnyslumber Guest

    I think that's why at some point in the future, unless there is some sort of dramatic change in XMRV/ME research it would be a great idea to have an "XMRV Conference." Lock everyone in a room and have a standardized testing plan come out of it. The people who don't understand Virology, such as the entire UK Psychiatric Lobby, would be left in the dust since they would have to explain away flaws in their procedures to a large number of competent virologists or just sit in the corner and admit their studies had flaws while the earnest scientists would come out of it knowing more and on the same page.
  19. Esther12

    Esther12 Senior Member

    I keep thinking I'm staying detached and cynical about all this... but when I read that I felt my heart in my mouth. If it does turn out that the WPI's results are seriously flawed I'm going to be totally gutted. (Just incase anyone missed Cort's post - VIP Dx have said this rumour is totally false).

    edit- @sunnyslumber - I was actually reading Cort's original post - just in case you thought you'd given me a shock. Ta.
  20. Lily

    Lily *Believe*

    Bless your heart, Esther. Don't ya just hate when that happens!:hug:

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