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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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The Fight is on...Imperial College XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.

  1. Jenny

    Jenny Senior Member

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    Well said Dr Yes. I was just about to make a similar point.

    "All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR."

    If patients were excluded if they had abnormal blood counts, for example, wouldn't that exclude many of us (eg with abnormally low lymphocytes)? And don't many ME patients have abnormally low or high 9 am cortisol?

    Jenny
     
  2. Alice Band

    Alice Band PWME - ME by Ramsay

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    Esther,

    I don't think that he excluded patients with a low or a high cortisol reading. I am just guessing that this XMRV test was run on the already banked blood of patients from that earlier cortisol study.
     
  3. Elliot

    Elliot

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    Just to say I'm getting my cortisol/adrenal gland checked in the coming month, in George Elliot hospital, apparently they're one of the few places they do it (it's a diabetes/m.e specialist clinic run there)

    Not very relevant but just thought I'd say ;)
     
  4. Hysterical Woman

    Hysterical Woman Senior Member

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    Good question Esther. I have abnormal cortisol rates. Would that have excluded someone like me from the study? Also I frequently have abnormal ESR - sometimes very high, sometimes very low. Would that be excluded too?

    Maxine
     
  5. jspotila

    jspotila Senior Member

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    JayS beat me to it! I just checked email and got the CAA article on the new study, came over here to share it with y'all, and you already had 11 pages on it! Clearly, I need to go back to bed.

    But I'm glad you are pleased with Dr. Vernon's discussion of the study. http://www.cfids.org/cfidslink/2010/010603.asp

    Like I have said in other threads, the Association is working very hard on communications and other XMRV-issues. We never give up, we never let up, and we always always strive to improve how we do all the work we do. Without a doubt, there will be more studies and information coming out over the next few months, and it is a priority for the Association to share and analyze this information as it becomes available.
     
  6. George

    George Guest

    That's why she gets the Cort stamp of approval

    Hee, Hee, Me too Cort me Too!!!:sofa:
     
  7. Koan

    Koan Be the change.

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    You have to get up pretty early in the afternoon to get anything past us, Jspot!
     
  8. George

    George Guest

    Ya got ta be quick round here (big grins)
    And Thank you for all the wonderful work you do!
    Great response, timely, well written and very polite!
     
  9. Dr. Yes

    Dr. Yes Shame on You

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    It's good to see a prompt response from the CAA, but it needs to get to the right people...

    I would like the CAA to issue a press release to the BBC to counter this one. And to US press services, in case this UK story gets hyped and... my doctors see only it! :eek:

    I hope Dr. Vernon picks up the issue of selection criteria as well regarding this study.

    I also hope this prompts the CAA to do what so many of us were urging: to redouble their efforts to critique the "known" studies underway if they are not using the correct criteria and to serve notice to anyone operating under the radar that Canadian Consensus and Fukuda selection criteria must be used for a CFS XMRV study to be considered truly respectable.

    Bad press can choke funding, directly or indirectly.
     
  10. Advocate

    Advocate Senior Member

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    Thanks JaySpot. I really appreciated the good, quick response from Suzanne Vernon. I'm even motivated to learn how to insert one of the little guys holding up a sign. (Tomorrow.)
     
  11. alice1

    alice1 Senior Member

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  12. garcia

    garcia Aristocrat Extraordinaire

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    Agree with Dr Yes on the above. CAA needs to get this info out to the people that count - namely the media (BBC in particular). No point preaching to the choir.

    Also please drop the ridiculous assertion that XMRV is a US-only retrovirus as a possibility. Instead of agreeing with them that this is remotely even possible, call them out on this ludicrous statement.
     
  13. Koan

    Koan Be the change.

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    good point
     
  14. oerganix

    oerganix Senior Member

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    I hope WPI doesn't say a word. I would hope the silence would be deafening; a response would be beneath an Institute doing REAL science.

    I am not at all disheartened by this. We knew they would do something like this. I am concerned that all this "negativity" came from CD testing. All 11 of our forum members have also tested negative by CD, so I'm wondering if their test is flawed. The VIP test poll is showing 7 positive and 7 negative. As Levi said, finding zero positives is a big red flag.
     
  15. George

    George Guest

    Come on over to "the Fight is on"

    You guys may want to stop on over to the "Fight is On" and see what all the hoopla is about. Hey Alice maybe you could copy and paste some of that excellent reply so others could jump from there to here and read what Dr. Vernon wrote.

    Great catch:Sign Good Job:
     
  16. Lily

    Lily *Believe*

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    :thumbsup:
    I don't think this can be said too many times - so I have to put it up again!!
     
  17. George

    George Guest

    We did it!

    The CFS/ME Community (including the wonderful CAA) has weathered our first negative psydo-replication study (grin) Hat's off to us. If this is the worst we face in the coming months we will be o.k.

    Just Kickin back relaxing:sofa:(with my favorite (thank you Kim) smiley)
     
  18. alice1

    alice1 Senior Member

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    I'm so not skilled on the computer but I will put the link up there.Thanks for the strokes.
     
  19. Cort

    Cort Phoenix Rising Founder

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    I find Dr. Vernon's presence at this time very comforting!
     
  20. parvofighter

    parvofighter Senior Member

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    OK, I have fun with my rants, but here are some more "guts"... Nah - I've first gotta do a mini-rant.

    Re: Wesseley isn't stupid

    With all due respect, this assumption needs to be re-evaluated (I'm trying to be gentle here). Fuzzifying the CFS definition is the very modus operandus, the very essence of Reeves and Wesseley's "science", and has been for YEARS! This forum is a fabulous place in which to educate oneself about the differences between Canadian, Fukuda, Oxford, etc criteria. Mice can be fuzzy. GOOD science can't, and that includes cohort definitions. Or perhaps to make things a little clearer, if your cohorts and PCR assays aren't comparable, it's like comparing these guys...

    [​IMG]

    Bottom line, I have yet to see an iota of evidence that Wesseley et al used the same cohort as the Science researchers - i.e. Canadian and Fukuda. Disqualifying patients with any sign of organic illness is a red flag that this is neither a replication study, nor a credible scientific enquiry into ME/CFS. C'mon. What kind of credible and unbiased researcher capriciously and arbitrarily decides that people with a given condition - in this case ME/CFS - can't have organic symptoms? That's a market segmentation ploy, not science.

    I'm reminded of that great image in Raiders of the Lost Arc, when Harrison Ford is confronted by a sword-wielding opponent. Ford finally gets sick of the spectacle - theoretically impressive tho it is... the optics are admirable - and just shoots the irritant. NO, I'm not advocating violence. But I am suggesting that some metaphorical purging of unscientific nonsense is necessary.

    [​IMG]

    Re: Mouse contamination
    Hasn't that already been put to rest by more credible scientists? Please revisit Peterson's comments:

    Phylogenetics - With XMRV it was important to differentiate it from all the other mouse retroviruses that are in the family of the gamma retroviruses. And this phylogenetic tree that was developed by gene-sequencing, demonstrated that this particular XMRV that we isolated from the Chronic fatigue patients was similar to, but not identical to, the XMRV that has been demonstrated in patients with prostate cancer, which are represented by the VP62 & VP25. Youll also note that phylogenetically this particular group of XMRV is quite disparate from the mouse retroviruses. What this means somewhat simplistically is that theres been a genetic deviation from the other mouse retroviruses making it very extremely unlikely that this represents mouse contamination in a laboratory. Secondly you will see that there is genetic differences in the strains that have been sequenced, which is what one would expect from retroviruses that arise in different locations and in different infections.


    Comparability of assays: A KEY issue!
    And finally, it is essential for us, as additional research comes out, to rigorously evaluate how comparable PCR assays were. It is a well known reality that PCR assays can be highly variable from one research facility to another. The viral myocarditis research is a great example of this, and if you take a time-lapse view of PubMed, you'll often find the very same cardiologists first saying, "No, we aren't finding any Virus X", then a couple of years later saying, "Yup, we changed our PCR assays, and we found Virus X".

    It's not until the "guts" of these assays are evaluated that we can determine whether in fact the study truly replicated the Science study. As Dr Coffin noted in his CFSAC testimony:
    "Its very important that we have standardized, uniform, well validated and reliable assays. This is really the critical issue here. And immunological assays are particularly difficult in this case."

    Now what I'd LOVE to hear would be some intelligent, fact-based commentary from credible scientists such as Dr Coffin, on comparability of assays, etc in this latest Wesseley "piece of work"! Anyone have an "in" with Dr Coffin?:Retro smile:
     

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