The Fight is on...Imperial College XMRV Study

[Martlet]

As for the cohorts issue, I would be surprised if no one in the study had ME/CFS. Sometimes patients attend these places out of pure desperation.

But even then, since it has been reported in just less than 4% of healthy controls, you would expect to see someone with it, even if they are perfectly healthy.

 

[_Kim_]

But even then, since it has been reported in just less than 4% of healthy controls, you would expect to see someone with it, even if they are perfectly healthy.

Ah, but there is still the question of whether or not they tested healthy controls at all. It may have been a reporter misinterpretation or a slip from McClure - but they were mentioned in the press.

I still say that they might have found XMRV in the healthy controls and threw out that data to make their point.

 

[MEKoan]

And people think Canadians are pushovers! Of course, those people have never seen hockey!

Good job, Parvo!

:victory:

PS I do agree with FE that the Economist did a not bad job, overall and compared to... , but asking them to hold themselves to a higher standard may well bear fruit since they already seem to be attempting same.

 

[parvofighter]

2 cents graciously accepted, Fresh Eyes!

Now you've got me looking at it from another angle. GEEZ!:Retro smile::Retro redface:

Hi parvo - you're really on a roll! I agree with everything you've said there - except for the criticism of The Economist. I thought their article was a good one, for what it was: light, general-interest reading. Far, far better than the "CFS Virus Myth Debunked" type stuff we've been seeing. I'm more than happy to see this played up as a big scientific controversy, as I think that will drive the research forward. *Not that you have to agree with me on this! Just my $.02.*

You're absolutely right that this is relatively better than the Debunked articles. And the Economist IS making the debate accessable. I just have a huge sense of unease that media like the BBC and Economist are dignifying the Imperial College study with the designation of "replication study" - when it's SO badly flawed. I mean this is what got us into this mess in the first place - supposedly bright people swallowing the CBT/GET tripe - at least as it relates to ME/CFS. How can we debunk it and get biological care for a neuro-immune disease if major media keep giving the psycholobby press? It's crazy! The tone @ the Economist also just still hits me as trite - they'd never do that for cancer or AIDS.

But I accept the gentle rebuke that we should be glad for small mercies! How'bout I meet you half-way!:Retro smile:

 

[fresh_eyes]

But even then, since it has been reported in just less than 4% of healthy controls, you would expect to see someone with it, even if they are perfectly healthy.

I agree, Martlet. All cohort questions aside, they should be finding it in any random group of people. The same thing happened with the prostate cancer studies. Either there's no XMRV in Europe, or it's a little bit different so they can't detect it, or their methods are faulty.

 

[fresh_eyes]

How'bout I meet you half-way!:Retro smile:

Right on, sister/brother! You're right too - it's too glib. But then again that's what many people want to read. So we're both right! Yay!

 

[Kati]

Parvo maybe you could use the same letter this time destined to BBC????

 

[leelaplay]

Originally Posted by parvofighter View Post
How'bout I meet you half-way!

Right on, sister/brother! You're right too - it's too glib. But then again that's what many people want to read. So we're both right! Yay!

YAY - what wonderful collaboration! We all win.:victory: What a team:Sign Good Job:


And to FE's previous post T

The same thing happened with the prostate cancer studies. Either there's no XMRV in Europe, or it's a little bit different so they can't detect it, or their methods are faulty.

I wonder why this study, posted by KFG, is being ignored. Notice, it came out in 2008

[KFG:Xmrv does exist in europe. And it's old news.....Two positives - one Prostate Cancer, one Healthy Control. Can people please stop saying there's no XMRV in Europe.....]

J Clin Virol. 2008 Nov;43(3):277-83. Epub 2008 Sep 27.

Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer.
Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T.

Institute for Medical Microbiology and Virology, University Medical Center Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany. nfischer@uke.de

BACKGROUND: We previously identified a novel exogenous gammaretrovirus (xenotropic murine leukemia virus-related gammaretrovirus (XMRV)) using a pan-viral microarray. XMRV is the first MLV-related virus found in human infection. Forty percent (8/20) of familial prostate cancer patients homozygous for a mutation in RNase L (R462Q) were positive for XMRV, while the virus was rarely (1/66) detected in familial prostate cancer patients heterozygous for R462Q or carrying the wild type allele. OBJECTIVES: To determine the presence of XMRV in non-familial prostate cancer samples. STUDY DESIGN: RNA from prostate tissue was analyzed for XMRV using nested RT-PCR. In all samples, RNase L (R462Q) genotyping was performed using an allele-specific PCR. RESULTS: XMRV-specific sequences were detected in one of 105 tissue samples from non-familial prostate cancer patients and from one of 70 tissue samples from men without prostate cancer. The two XMRV-positive patients were wild type or heterozygous for the R462Q mutation and thus carried at least one fully functional RNase L allele. CONCLUSIONS: XMRV was rarely detected in non-familial prostate cancer samples from Northern European patients. The homozygous mutation R462Q (QQ) was significantly underrepresented (<6%) in this cohort when compared to other studies (11-17%).

 

[CBS]

And to FE's previous post T

I wonder why this study, posted by KFG, is being ignored. Notice, it came out in 2008

[KFG:Xmrv does exist in europe. And it's old news.....Two positives - one Prostate Cancer, one Healthy Control. Can people please stop saying there's no XMRV in Europe.....]

OK - How's this?

There's currently no evidence that a majority of researchers in Europe know what they are doing when it comes to identifying XMRV!*

* This includes looking for it in healthy controls, patients with prostate cancer (note the reference to an exception listed above), properly and improperly diagnosed CFS patients, and tired depressed patients. I'd submit a list of actual disclaimers but my head hurts and I have CFS and I'm under orders to rest after the last few days of effort.

 

[fresh_eyes]

You're right, IF. I had seen that but forgotten. So better to change the first bit of what I said to, Either it's very, very rare in Europe...

You know, it would be great if someone really smart and science-minded could look at the techniques used in the various XMRV studies, to see how - exactly - they vary. And make us visual learners a simple chart. Any takers?

ETA @ Shane: Ha! Now back to rest, you. After your big success getting the attention the IACFSME, you've totally earned it.

 

[parvofighter]

Help - BBC links?

Parvo maybe you could use the same letter this time destined to BBC????

Thanks Kati, I already did send a version to the BBC. That said, the only way I could figure out how to get ANY feedback, was to submit it under general Complaints. So I'm honestly not sure where that will end up.

Kati, do you - or does anyone here - have a hotlink for another place on the BBC website - ideally linked to the article - where I can post a version of the letter again?

Hanks!:Retro smile:

 

[Mithriel]

Just want to clarify that I am not saying that no one who attends the KCL clinic has CFS or even ME.

From the descriptions in the papers (not entirely clear) they seem to have looked at consecutive attenders, which I think means the next, say, five hundred who were referred and then screened them for their own brand of "authentic" CFS.

They say they then excluded all those with organic disease. We know that their definition of CFS also excludes anyone with neurological signs.

Then these patients were administered a questionnaire and the ones who answered it properly were used in the studies and had their blood frozen.

These were not a random set of patients, but were carefully chosen.

However, I would have been more impressed if the study had found one patient with XMRV. Was this a group that had had no dealings with anyone from the US?

Mithriel

 

[hvs]

I agree, Martlet. All cohort questions aside, they should be finding it in any random group of people. The same thing happened with the prostate cancer studies. Either there's no XMRV in Europe, or it's a little bit different so they can't detect it, or their methods are faulty.

Yep. This is the take home message. In the absence of healthy controls and a single identification of xmrv in a human, the Imperial College/Wessely researchers can only claim that their study suggests one of two things:
1. There is absolutely no xmrv in the UK among anybody.
2. They are incapable of finding it with their methods.

That's it.

 

[fresh_eyes]

Yep. This is the take home message. In the absence of healthy controls and a single identification of xmrv in a human, the Imperial College/Wessely researchers can only claim that their study suggests one of two things:
1. There is absolutely no xmrv in the UK among anybody.
2. They are incapable of finding it with their methods.

That's it.

I'm glad you agree, hvs. This seems like really good news to me, much simpler - we don't have to argue (yet!) about what CFS is/isn't. At this point, the only question is does XMRV not exist in the UK, or are their methods flawed? The public - not just the CFS community - should want the answer to this. From there we can go on to whether XMRV causes disease.

ETA The US Dept of HHS certainly thinks it's important, with that Blood Safety Task Force. I think the UK Govt brushes this off at their peril.

 

[Dr. Yes]

from Mithriel:

They say they then excluded all those with organic disease. We know that their definition of CFS also excludes anyone with neurological signs.

If we can verify from them that this is true, then I think it will become a simple matter to debunk their study both in the scientific community and in the media. If it is established on the record that patients with orthostatic intolerance, abnormal white cell counts or any other physical abnormalities were excluded from the study, I think we will have all we need to make this study fade from both public and scientific memories; it will no longer hinge on finding a flaw in their laboratory methodology.

I am still hoping that Dr. Vernon at the CAA can raise this issue with Wessely et al; I had requested the Jennie Spotila pass on the request; today she told me that the CAA has no plans to issue a second press release (involving this and other issues with the study) so I asked her if she would ask Dr. Vernon about directly contacting the Imp College team on at least this one issue. But if anyone has another idea along these lines, let me know. (And post on it). I still prefer this idea to only contacting Wessely ourselves; the request for clarification coming from a fellow professional will have a different effect and carry more weight.

These were not a random set of patients, but were carefully chosen.

I agree; this is all too often the case in medical research studies. Objectivity is harder to find than one would like to believe. I have seen plenty of eager, idealistic scientists, and even older ones, become badly disillusioned by the power of politics to interfere with real scientific efforts, especially in medicine. (I was introduced to these political factors at a younger age -- yippee!) In this respect, I have found that researchers can be divided into three categories: those who are committed to accurate science no matter what the cost to their careers, those who are willing to bend to political pressure of one sort or another, and those who are politicians first and scientists later (if ever). The middle group is the majority; the more vested interests are involved in a particular field, the more researchers you will find who unfortunately fall into the last category.

If you have experience in medical research politics (and probably even if you don't), you should find nothing surprising about the idea of an influential figure manipulating his experimental cohorts, or otherwise skewing his data. I have seen it in fields with far lower stakes than these. If it seems that it would be too difficult to pull off, just note the apparent 'selection' process outlined previously on this thread (e.g. in Mithriel's post). If it seems too "diabolical"....hello and welcome to the world! :Retro wink:

ETA- From Fresh eyes:

The US Dept of HHS certainly thinks it's important, with that Blood Safety Task Force. I think the UK Govt brushes this off at their peril.

Actually, aren't ME patients banned from giving blood in the UK? Think I read that a couple places. Which would make their general standard of treatment there all the more bizarre.

 

[Jenny]

Parvofighter

Thanks Kati, I already did send a version to the BBC. That said, the only way I could figure out how to get ANY feedback, was to submit it under general Complaints. So I'm honestly not sure where that will end up.

Kati, do you - or does anyone here - have a hotlink for another place on the BBC website - ideally linked to the article - where I can post a version of the letter again?

I've suggested a new 'Have your Say' topic on the BBC site, as follows:

Research suggesting the newly discovered retrovirus XMRV is implicated in ME has led to great excitement amongst researchers and ME sufferers ('ME virus discovery raises hopes' Oct 09.) Recent UK research ('Research finds no proof that a virus is the cause of ME' three days ago)has been interpreted as casting doubt that this virus is implicated in this devastating illness. But the UK study is flawed and over the last few days scientists and sufferers have been debating the merits of the methods used in the two studies. Readers of your report of 3 days ago need the opportunity to have their say on where this leaves us.

I'm hoping they will accept this as a new debate. If they do, it should appear in the next few hours on the BBC site.

Jenny

 

[George]

Oh,oh,oh

I know, I know (raising paw and bouncing) the answer is that XMRV can't swim, so it can't make it over to Europe, oh, no wait, it made it to Japan so it must be able to swim. (looking confused). Wait it must be the airport scanning systems in Europe they don't let the little virus guy in. Yeah, yeah, that's the ticket. It's the Airport screening devices. . .yeah, yeah.


(thought I throw some levity in there(big grins))

 

[fresh_eyes]

Actually, aren't ME patients banned from giving blood in the UK? Think I read that a couple places. Which would make their general standard of treatment there all the more bizarre.

I think you're right. All the more evidence that they're failing to live up to their obligations under the WHO to address infectious diseases. And they probably know it, which explains all the sealed documents.

So, re the rest of your post, it all boils down to one question, yes? Did they actually exclude all those with any sign of organic disease? Seems like an easy enough question to answer. Have you considered posting it in the comments section? Some comments/questions are getting answered.

http://www.plosone.org/article/comm...9;jsessionid=976FFE5FE3E30CAB79104464E6EEEEF3

 

[hvs]

If we can verify from them that this is true, then I think it will become a simple matter to debunk their study both in the scientific community and in the media. If it is established on the record that patients with orthostatic intolerance, abnormal white cell counts or any other physical abnormalities were excluded from the study, I think we will have all we need to make this study fade from both public and scientific memories; it will no longer hinge on finding a flaw in their laboratory methodology.

Hey, Doc. The way I read their *paper, I can't see it any other way: CFS patients have measurable physical abnormalities that distinguish them from, say, under-slept or depressed people; therefore, Imperial/Wessely by definition didn't test CFS patients. If I'm wrong, they can certainly correct me by telling me of their subjects' NK cell, RNaseL, cytokine, VO2 max, etc. status and I'll eat my words.

*Peer-reviewed publications provide the basis for academic discourse. Statements not subjected to peer review are not the currency of science and letters. The Imperial College/Wessely piece was the equivalent of a blog essay: a discussion piece, but not a standard academic publication

 

[fresh_eyes]

Wait it must be the airport scanning systems in Europe they don't let the little virus guy in. Yeah, yeah, that's the ticket. It's the Airport screening devices. . .yeah, yeah.

Must be different scanners than they use to detect underpants bombs...