Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Discussion in 'XMRV Research and Replication Studies' started by Orla, Feb 15, 2010.

  1. George

    George Guest

    The Science looks solid

    Well, the bad news is that this study is exactly what you would want in a replication study. Every i was dotted and t was crossed. It was perfectly designed and well thought out, and executed. They didn't find XMRV associated with any of the CFS patients that they studied. (Course maybe they should be studying ME patients, (big grins)

    So now we wait and see if the Canadian study works out since it would use a very specific definition. The studies really should be coming in pretty quick in the next four weeks.

    This does explain why the IC people were so "sure" about studies that were coming out that would back them up. Cause I don't think this study can be faulted.

    On the other side of the coin there are obviously studies out there that go the other way according to Dr. Mikovitz. Hence both sides saying that they know of studies that will back up their research. So now we wait to see a positive study. If they don't hurry up though I'm going to OD on 'scetti!

    I would like to say this about this study. It was really professional. Unlike the snarky comments and press conferences of the IC study with all the chest pounding and grand standing this was scientist being good scientist. Cautious and careful. It's nice.

    For us we are just going to have to take our lumps and solider on like Koan says. So hang in their everybody.
  2. Min

    Min Guest

    "All patients met the Fukuda criteria"

    This is a second UK study that did not use the Canadian Consensus Criteria to select patients with neurological M.E. . The Fudaka criteria are very wide and seem to include patients with fatigue from psychological causes - of course these do not have XMRV. What was the point of studying them?

    Please does anyone know who funded this?
  3. Lily

    Lily *Believe*

    THANKS GEORGE!!!:Sign Good Job::hug:
  4. Katie

    Katie Guest

    Dr Kerr is a good guy and a lot of his work has gone towards differentiating us from ideopathic fatigue and depression. This is not good news. I'm not sure what to say that's constructive but I trust Kerr to have done his best. We've still have a lot more voices to hear.
  5. sproggle

    sproggle Jan

    Teesside, England UK
    I'd like to second Lily thanking George for the honest appraisal. There's no point sugar coating it, we need the truth whatever it is. It's important to also remember that whatever happens with XMRV it's not the end of the road as far as research and possible treatments go.

    Hang in there everyone, and if anyone is particularly affected by this please share your feelings. You will definitely get support from everyone on here, and it is totally understandable :hug:

    take care all
    Jan xx
  6. V99


    At least this was a replication study, unlike the IC study.
  7. CBS

    CBS Senior Member

    Here you go:

    I have read the study from start to finish and my impressions are very much in line with George. Kerr is solid and has done good work in the past. In the very recent past, his work has shown strong biological evidence for CFS and he has provided evidence differentiating CFS from depression. He doesn't think this is psychological (Microbial infections in eight genomic subtypes of CFS/ME - J. Clin. Pathol. published online 2 Dec 2009;). Funding and bias are not at play in this. I know that there is a huge degree of angst as people that have been sick for so long need to know that answers are on the horizon but this is science. As George said, this is exactly what you would want in a good study (but it is not a replication study as I incorrectly referred to it). In Kerr, we have the type of scientist with whom I am very comfortable entrusting my health.
  8. IamME

    IamME Too sick for an identity

    John Gow was also unable to find RNase L in UK patients. Make of that what you will.
  9. FernRhizome

    FernRhizome Senior Member

    I wonder if there were any patients in this study that tested negative that had prevously tested positive in Dr. Judy's study??? That would be fascinating to know. Shouldn't we keep in mind that false negatives and very likely to be happening? Yes, Dr. Judy's response will be interesting since the study is by such good UK doctors that were part of the funding package for XMRV studies...~Frn
  10. Elliot


    Leicestershire, England.
    All I can say is. Damn. :(:(
    To be honest, I'm a huge proponent of science and how it works. But I have been hoping beyond hope they have found a cause, it's kept me going through this relapse.
    Ah well. :worried: There's more studies to come I guess.
  11. jace

    jace Off the fence

    Aww Shucks. But as Koan says, it is the truth we want. The only thing that will set us free is the truth of the causation. But the game's not over until the fat lady sings. I await further developments with interest (and with my fingers crossed).

    You just never know what's round the corner...
    that's enough already with the well known phrase or sayings, Jace.
  12. I was really sad to read about this.
    I think we were right to be mistrustful of the IC study, but one of the people on our side, who's aware of all the politics, not finding XRMV? ... it's all a bit depressing.
    If anybody needs any hugs, I'm here to dish them out.

    Rachel xx
  13. George

    George Guest


    O.k. follow me here and help me out I only have half a brain and need you guys to put the other half up for me. . .

    Dr. Kerr is listed second to last so I doubt that he had any hands on in this. And we knew that a negative study was coming down the pike so no big really.

    But I just realized that in order to get a "serology test" up and running you have to have a set of positives to compare it to. That's one flaw.

    Flaw two, if it's not a "serology" test but an antibody test why would you jack the assay around to pick up "contaminates" like MLV or Mouse Friend virus????

    It confused the heck out of me when I read that part. Wouldn't you specifically want to make sure that those didn't come up???

    Dr. Vernon would know more about this has someone sent her an e-mail? I think I will if no one else has. God knows she's been second to last name listed on enough studies to know just how much involvement that person has.

    Gerwyn, Erik, Levi, Shane, Katie help me out here. . .

    O.K. folks weigh in.
  14. You know what, George, I was just thinking the same thing. I think Kerr just supplied the samples. (Wessely supplied the samples for the IC study, and he is second to last too.)
    I don't think Kerr had any involvement beyond that.

    Rachel xx
  15. Quilp

    Quilp Senior Member

    Hello George thanks for your help in all this. I would be very surprised if Dr Kerr didn't have his hands on all this. This is why this study is so disappointing, because he was on the team doing the study. I cannot believe he has allowed any mistakes to be made. His credibility here in the UK is second to none, and although mistakes can be made I very much doubt that he hasn't been in touch with WPI throughout this study.
    I think it is time to face facts. Sorry for the rant, I am barely able to speak.

    Kind regards, Mark
  16. Dorothy


    I really would like to know more about the patients that Kerr used in this UK study. I don't think using the Fukuda definition is going to yield many folks with "true" ME/CFS. It's just too vague. I have a friend who was tentatively diagnosed with CFS and then later discovered that all her symptoms were side effects of a statin drug (I think it was Lipitor). She'd been very tired, her muscles and joints hurt, and she had trouble sleeping, but her symptoms didn't get worse with exercise and activity - so I didn't believe she had CFS, but the doc did, since she met 4 of the minor criteria. She got "cured" by stopping the statin drug. In another case, a friend's daughter was thought to have CFS and it turned out that she had a chronic infection (a very nasty one) in her tonsils - a tonsillectomy cured her. In both cases, the doctors didn't really understand CFS and simply read the Fukuda "menu" and used CFS as a sort of wastebasket diagnosis. I don't know if that's the case with the latest UK study, but if it is, then it would be no surprise that XMRV is not showing up. The WPI's use of the Canadian Consensus criteria might be a big factor in turning up more cases of XMRV. Post-exertional malaise really needs to be a required symptom. The whole Fukuda "pick 4" out of 8 symptoms sounds more like a lottery game than a medical definition.
  17. flex


    London area
    The WPI could be run out of town tomorrow by the powers that be if they wanted to. I strongly suspect this is their plan, but to do it with the backing of dubious studies. All they have to do is have a couple more fake studies then it will be full out attack on the WPI for "Misconduct and unnecessary panic with flawed results". This is exactly what they did with the MMR issues. Discredit people and claim that you have disproved peoples theories. This is a very dirty corrupt game and it happens all the time. Even the "good guys" will be getting set up and have enormous pressures on them.

    Lets hope we can stay in the fight and just keep going.
  18. Katie

    Katie Guest

    This isn't THE Kerr study is it? This is the Stoye and other person one, this could mean we've still got a Kerr study to come which makes sense considering his work was due in the summer. This is more positive for me.
  19. Yes good point Katie.
    I really think that Kerr supplied the samples and that was his only contribution to this paper. He is listed second last which means he had little or no involvement.

    EDIT: Correction! It does indeed say in the acknowledgement: "JK, JS and KB conceived and designed the investigation"
    Bah humbug.

    Rachel xx
  20. Elliot


    Leicestershire, England.
    I wouldn't mind a hug! :p
    If XMRV is disproven to have a correlation with m.e/cfs..could this be harmful in the long run to the legitimacy of this illness? Bah. Really do hope the other study groups show more positive results. I'm always for the truth coming out, but when it's something so close to your heart it's hard to be rational.

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