The Fight is on...Imperial College XMRV Study

[Dx Revision Watch]

Spit wrote:

"They didn't have a healthy control, they ran water instead for a negative control..."

For the Kerr/Wessely August 2005 "Association of chronic fatigue syndrome with human leucocyte antigen class II alleles" study they also used a cohort of "Fukuda" from King's College London and cadavers for the controls.

They don't ask questions, they don't complain and they don't need biscuits.

Simples.

 

[hvs]

Martlet, et al, please take OT discussion to PMs.

 

[fingers2022]

What are we hoping for?

Yes, you're right. This site is here to allow all sufferers to express their views. We have no requirement that they all be in agreement.

As it happens I am not sure about whether I want to hear that I have XMRV. I think it's possible that I don't have it. Also think it's possible I do. Actually I'd rather think that what I have is a problem with particular foods and run down adrenals.

I also know that it's possible that the research on xmrv may NOT lead to a definite conclusion that it causes CFS. It's way too soon to tell. We have been down similar roads before.

Meantime, being supportive of each other, is the order of the day on these forums.

Jody, thanks, your comments made me ask myself what I'm looking for here. My personal experience is that I've been prone to infection when stressed. And when stressed, my immune system doesn't work....I feel ill all the time, but get very ill when I stop (evenings, weekends, and holidays - like Christmas, 3 weeks of flu, and still counting). I still work full time, after 19 years of this, so maybe I'm not a candidate for a cohort, although my activity level is down to 10% of previous.

Maybe we can all learn from our collective experience? In 1991, I got ill, like I had on a few occasions before, but this time it didn't go away. For me, that could be the XMRV connection - the one that doesn't go away, and the one which leaves the immune system permanently compromised. But that leaves the point that not everyone gets it, so there's an underlying weakness in the first place, which must be either genetic or circumstantial, or a combination of the two. It doesn't seem to be like HIV/AIDS, which is mainly circumstantial (sorry if these are the wrong technical terms).

So, I'm not looking for XMRV to be the root cause, but simply a piece in the puzzle. Susceptibility could explain the difficulties in explaining the transmission.

Meantime, enjoy watching the techies exchange blows - it will all come out in the wash in the end. If it doesn't, I'll be in the queue to deliver a few blows in the right direction, no matter how crap I feel.

I find it very frustrating though that the researchers can't coordinare efforts in order to optimise the route through this.

Love to all
Satch

 

[srmny]

Spit,

Thanks. Your post clarified my understanding of the study.

srmny

 

[MEKoan]

Bold mine

I am not aware of Wessely having published papers before via PLoS. I imagine the attraction was the speed with which the paper might be got out through PLoS, compared with the type of journal with which Wessely (and possibly his co-authors) are more accustomed. It is also published "Open Access" - so it's widely available to all, not just those with subs and journal access via institutions.

I think the broad access this journal provided, along with the ease of pub. and access to a friendly reviewer, was a big attraction.

I believe that Wessely fights this battle in a public arena very deliberately. A psychiatrist is not unmindful of how to work the zeitgeist.

 

[spit]

srmny -- I'm not sure I'm understanding your question, but let me try to see if I can clear it up a bit --

it appears that the Imperial College study did not have a control group, at least not in terms of "healthy people who don't have CFS symptoms", no. They used water, it seems, as their "negative control", unless I'm misunderstanding something somewhere. Now, that's not useless, either -- it does check for contamination problems. But it's a control for testing the test, not a control for the actual question of XMRV possibly appearing in one population but not another.

You are correct that a "healthy" control group would help determine the rate of XMRV in the general population. That would be an important number to have, to show whether CFS patients have more XMRV than healthy people do. Of course, they found no positives, so it would have made no difference. But I don't understand why they didn't at least select a control group -- if they had gotten positives, they would have had no healthy group with which to compare them. I suppose they could have found a bunch of control samples after finding positives, it's just still weird to me, honestly.

 

[garcia]

Well now yer edging me by 22 percentage points Garcia! Thats an i n s a n e position. Our fleeting moment of amity has come to an abrupt end.

Surely you mean our fleeting moment of unity? We might disagree on the percetages, but we can still be friends!

Seriouly though I think our differences in confidence can be ascribed to our different starting positions. You want this to be true, so are more conservative than me. Conversely I want the XMRV result to be false, but (by Murphy's law) I believe it to be true.

Also the retrovirus theory is the only theory which makes any kind of sense to me. In my mind the only anomoly left to explain are the outbreaks. Thats the one thing this theory can't explain well so far.

 

[Martlet]

Martlet, et al, please take OT discussion to PMs.

hvs - We will moderate and comment in-thread, when the issue merits it.

 

[starryeyes]

George Thanks for explaining blinded and non blinded studies.

*Tee pets George on the head.*

jspotila wrote: The Association is sending out a press release today through a news wire service that will allow us to track pick-ups.

What does track pick-ups mean?

tee

 

[MEKoan]

What does “track pick-ups” mean?

tee

Hi Tee,

I think it means the service can track how many news agencies pick it up.

 

[hvs]

You are correct that a "healthy" control group would help determine the rate of XMRV in the general population. That would be an important number to have, to show whether CFS patients have more XMRV than healthy people do. Of course, they found no positives, so it would have made no difference. But I don't understand why they didn't at least select a control group -- if they had gotten positives, they would have had no healthy group with which to compare them. I suppose they could have found a bunch of control samples after finding positives, it's just still weird to me, honestly.

Right.

The only thing that they can logically conclude in the absence of a control group is "we cannot detect xmrv," period. They can only say either 1) "xmrv doesn't exist in human beings at all," or, 2) "we are technically incapable of seeing it."

They cannot logically conclude that CFS patients do not have it at a greater rate than healthy people. They simply cannot make that statement based on their study. This is Logic 101.

 

[dipic]

Dipic, this is not a mere disagreement or dispute, is it? It is about a very small number of people hounding another member on a very personal level. Anyone should feel safe to disagree with the prevailing view without being subjected to personal attacks. If everyone sticks to the points of their disagreements, then there is no need for moderators to step in.

I disagree, but what else can I say? I apologized to Holmsey for misjudging his character and intentions. Regardless, I think you missed the point I was making, which was simply that closing a thread due a dispute or "hounding" or whatever the precieved transgression, is not the answer, and does nothing to fix the problem.

If you still think there is an issue here, feel free to shoot me a PM. I would rather not derail this thread even further.

 

[maryb]

I disagree, but what else can I say? I apologized to Holmsey for misjudging his character and intentions. Regardless, I think you missed the point I was making, which was simply that closing a thread due a dispute or "hounding" or whatever the precieved transgression, is not the answer, and does nothing to fix the problem.

If you still think there is an issue here, feel free to shoot me a PM. I would rather not derail this thread even further.

Can I just say i think dipic has apologized enough and has asked if it can be dropped - please respect this.

 

[spit]

I think your list is right, spit; but I disagree with this. Upon publishing a paper reviewed only by an editor for 72 hrs, PLoS became little better than a blog. They and the paper writers would get laughed out of the room in my profession.

I don't really agree or disagree, honestly -- I'm kind of neutral on PLoS. They're reviewing for technical merit only. Something can be a fine experiment on its face and still not mean much in the grand scheme. Their goal of open access, I quite like, and they're also trying to get around the problem in many journals of the process including an element of whether a couple of folks think a finding is important enough to publish, which is inherently subjective. I'm ok with that in theory, but I think that has to be done very carefully to make sure that the results they're publishing are not just theoretically ok in methods, but solid in meaning, with rigorous questioning that can't likely be done in a couple of days.

72 hours with a technical editor is hardly enough time. 72 hours for the entire peer review process is highly, highly suspect, I agree.

I'm assuming that the authors chose PLoS for the speed factor, because if they really stand by this research and think it's solid, it almost certainly passes the "importance" test for most traditional journals. And the speed factor is itself about politics, frankly. If this is solid, they almost certainly could have published it in a lot of different journals, but that would have taken longer, and they didn't choose to do so. You can read that a number of ways.

 

[George]

Kurt My Bad

I was the one that posted about the rumor from the PA at my Doctors office saying that he had "heard that the CDC was publishing on the 12th" So we are talking 3rd hand at best here. If the CDC report is delayed for any reason I'm personally going to feel really bad for posting a rumor, even if I did state it was a rumor.

 

[spit]

I'm unclear on whether it would really unblind the study, actually. They wouldn't be running vials of whole blood, they'd be running vials of extracted DNA. Which looks surprisingly like snot if you precipitate it, but in solution isn't really obvious, honestly. It wouldn't necessarily be an easily visible difference.

I do think it makes me wonder about their thought process. I know nothing about their motivations, obviously, but they look to have been unprepared for actually finding positives and interpreting them. The scenario sounds to me a lot like they were testing their assay itself, and failed to get any positives in the course of that process, and assumed that their assay was accurate anyway because it caught the positive sample they had, and decided to run with the interpretation that all of this together meant there were no positives. But that really is an out-of-my-bum guess.

 

[kurt]

I was the one that posted about the rumor from the PA at my Doctors office saying that he had "heard that the CDC was publishing on the 12th" So we are talking 3rd hand at best here. If the CDC report is delayed for any reason I'm personally going to feel really bad for posting a rumor, even if I did state it was a rumor.

Not to worry, I suspect they are just working over the publication at this point, hopefully we will see that soon. And then I expect this discussion will go from flames to a bonfire...

I think what many on this forum may not realize is that PWC are not the only ones who are disappointed at the negative findings. Collectively, replication study researchers have probably invested Millions of $$ over the past three months trying to replicate this. These types of studies conducted quickly are labor intensive and that is not cheap. And given the difficult economy right now and the solid-looking study in Science, I believe most of the researchers invested in XMRV fully expected to be finding XMRV. Probably nobody set out to disprove anything, they just wanted to be on the bandwagon. But who knew? This has happened before with other retroviral hunts, and this happens all the time in science, just the nature of the beast. Some wins, some losses.

Stay tuned, the best is yet to come...

 

[Min]

In the comments page of the Independent article, someone has likened xmrv 'bypassing' the UK to AIDS & HIV 'skipping' South Africa.

 

[Eric Johnson from I&I]

I think only PLoS ONE is relatively unreviewed. Not PLoS in general.

I dont care whether it was reviwed, really. I can review it myself. I dont know quite how review works though -- I think sometimes more stuff is submitted than shows up in the paper. So if such exists, I wish I could see it all.

 

[MEKoan]

The scenario sounds to me a lot like they were testing their assay itself, and failed to get any positives in the course of that process, and assumed that their assay was accurate anyway because it caught the positive sample they had, and decided to run with the interpretation that all of this together meant there were no positives. But that really is an out-of-my-bum guess.

Spit,
This is a most intriguing hypothesis! You have one very smart bum!