Imperial College study boost chances of replicating the WPI findings

[Marco]

Its been all a bit doom and gloom recently following the IC study release and no concrete news of further proper replication studies being published in the near future.

All very understandable. But I recall discussions following the WPI release of the dangers of failure to replicate their findings and the need to make sure any virologists working on XMRV are aware of the politics, diagnostic criteria, the importance of following protocols and the potential for vague CFS classifications to hinder proper research. I also recall more than an element of doubt that the advocacy groups were prepared and capable of policing further research to ensure that it is reliable and unbiased.

The IC study publication, the WPI response and the continuing debate, via comments on the Plos, Science, New Scientist etc websites have had the effect of bringing all these things out into the open. No virologist studying XMRV can now be unaware of the issues or of the exact protocol followed by WPI. Not only that, but they are also now aware of how easy it is to get a negative result.

I'd be happier now if further studies are now a little delayed while the researchers digest this information and take the greatest care posssible to avoid the 'mistakes' made by the IC team.

Hats off to Imperial College.

 

[Abraxas]

I like your thinking on this Marco - and as frustrating as it may be waiting for more news, I also agree that it's imperative that other researchers take their time.

 

[ukxmrv]

I don't think so Marco.

The IC team showed researchers in the UK, they can blatantly get away with a dishonest attempt to discredit the WPI. They also showed fellow researchers that they will fight dirty. By this I mean the poor research, the insinuations against the WPI and the over-the-top agressive press conference.

IC have got away with it. Nothing has happened and if they can set the tone for the UK, then XMRV research here is doomed.

The NHS, doctors and researchers can and will keep saying that there are no abnormalities in PWCFS and ME and that research done on patients abroad doesn't count.

The IC paper was a disaster here for PWME and CFS. Already patients have been told by doctors and by health authorities that there is no XMRV here and that our results are false.

Even if the research is replicated elsewhere the UK authorities will continue to deny it.

 

[Abraxas]

I perceived Marco's post as looking for a possible silver lining around the cloud that was the IC study, at a time when it's difficult to remain positive about the outcome of further research. I just hope consensus builds in the right direction over time. The proof will be in the pudding...

 

[thefreeprisoner]

Good thoughts Marco - it's interesting to see a positive perspective on the IC study.

Judy M mentioned that she is working on replication studies with people in the UK. There are several virologists (current well-respected ones as well as budding ones) very excited about it over here. Whether or not the government chooses to listen now, they soon will, because a new infectious human retrovirus is big news. Also because of movement of global populations, even if you believe that nobody in the UK has it, soon somebody will for sure, and they will need to look after our blood supply.

So, well done Marco for cheering me up a bit.

Rachel xx

 

[valia]

I don't think so Marco.

The IC team showed researchers in the UK, they can blatantly get away with a dishonest attempt to discredit the WPI. They also showed fellow researchers that they will fight dirty. By this I mean the poor research, the insinuations against the WPI and the over-the-top agressive press conference.

IC have got away with it. Nothing has happened and if they can set the tone for the UK, then XMRV research here is doomed.

The NHS, doctors and researchers can and will keep saying that there are no abnormalities in PWCFS and ME and that research done on patients abroad doesn't count.

The IC paper was a disaster here for PWME and CFS. Already patients have been told by doctors and by health authorities that there is no XMRV here and that our results are false.

Even if the research is replicated elsewhere the UK authorities will continue to deny it.

Whatever else comes out, in the UK the results of that crappy IC study are going to be quoted for ever more

 

[natasa778]

they will need to look after our blood supply

That is the key, isn't it. If the problem is confirmed and the US (and maybe other countries) take steps to prevent blood supply contamination, it will become very hard or even legally impossible for NHS and UK medical establishment to keep denying there is a problem.

 

[MEKoan]

If the scientists at WPI, CC, NCI and Science are at least as smart as we are , and didn't decide to ruin their reputations by being rash and running off to publish something half baked (given they had full awareness of the history of viral research in ME it is hard to believe they would) and if XMRV behaves as they believe it does, it threatens the BLOOD supply, everywhere, and there will be no denying it.

I don't believe anything short of a smoking gun would shake the shrinks off our backs but ignoring this finding risks creating many more of us which is not what they want. This science makes clear that it is in everyone's best interest - especially the insurance industry, ironically - to identify, diagnose and treat us seriously.

 

[DysautonomiaXMRV]

I'd be happier now if further studies are now a little delayed while the researchers digest this information and take the greatest care posssible to avoid the 'mistakes' made by the IC team. Hats off to Imperial College.

Do you believe the IC study was simply a mistake, when the person who chose the patients has spent his life claiming ME/CFS is simply a belief, and critically that the belief in a virus causing ME is an example of 'Somatization Par Excellance'. What would be the chance of this 'mistake' of not finding XMRV happening in a person who declared XMRV wasn't in the UK before even doing the research? About zero.

Anyone aware of British ME/CFS politics knows it was a willfull design designed to harm the legitmacy of ME/CFS and DELAY FUNDING for bio-medical research. By delaying research, be it 1 year or 30 years, MORE people will die of Cancer, Cardiac Emergencies and Suicide.

Anyone who has Cancer due to CFS, or has been in a resusitation room like me due to cardiac issues, will understand the grave situation patients in the UK are in. The failed (by design) XMRV IC studies hand reaches out accross the atlantic and helps stall funding for research in the USA also. People in the USA are dying too. The IC study helps to de-legitimize the WPI Science paper (to the uninformed) and helps 'allow' news media to dismiss the XMRV finding. There is an interesting video of an unfortunate yet brave gentleman, (an American ) here giving his testimony to the CFSAC recently, since the XMRV discovery was made public. One can imagine if one has cancer due to CFS, the utter terror one would feel anyway, that is further heightened by news such as the designed fake XMRV IC study coming from the UK that can delay financing and interest into the disease.

Especially studies who employ people who are in agreement with other people that ME patients are 'disgusting' and should feel 'shame' for their disease - as Professor Simon Wessely says A man who just happened to have personally selected the cohort in the UK XMRV IC study that found zero incidence of the condition.

I do not tip my hat to killers, period. Especially when their mad theories have nearly cost me my life, literally. When it gets that personal, one must devote what little energies one has to set the record straight on state funded medical neglect- which is exactly what I do and will alway do when capable.

 

[DysautonomiaXMRV]

Good point natasa 778.

In the British Parliament we have so far gotten this far on the issue: Source

"The Department has no current plans to directly commission research on this issue. However, the Medical research Council has designated myalgic encephalomyelitis/chronic fatigue syndrome a priority research area, and will fund proposals of sufficient quality. The UK Blood Services together with the Health Protection Agency are undertaking a study of the prevalence of a rodent virus recently linked to myalgic encephomyelitis, which will be used to inform a risk assessment."

 

[Katie]

Ok, this is what I take heart in.


Compared to America the UK has about as much influence as my elderly cat named Kitty has on the price of potatoes.


If America decides that XMRV is indeed the cause or even involved in ME then they write the text book, not us. How then did Wessely become so influential in the US via Reeves? Because the American science world hadn't written anything in the ME textbook, doesn't exist. We do still have the power to trump nothing

We can't do anything until America does it's thing and comes up with the answer we're weirdly hoping for. This IC thing will be a blip, less than a footnote. At least I hope.

This is just one study, let's not forget we've got a marathon to run.

 

[oerganix]

XMRV in UK

Good thoughts Marco - it's interesting to see a positive perspective on the IC study.

Judy M mentioned that she is working on replication studies with people in the UK. There are several virologists (current well-respected ones as well as budding ones) very excited about it over here. Whether or not the government chooses to listen now, they soon will, because a new infectious human retrovirus is big news. Also because of movement of global populations, even if you believe that nobody in the UK has it, soon somebody will for sure, and they will need to look after our blood supply.

So, well done Marco for cheering me up a bit.

Rachel xx

Rumor has it that about half of 50 people from UK tested positive for XMRV at WPI. Two people from UK have posted their positive results here on this forum.

Also, Dr Mikovits said in her recent presentation that she didn't know it at the time, but when the cohort was unblinded around Christmas time, it contained samples from UK, Ireland, Germany and Australia as well as many US states. So, explain that Imperial College!

 

[natasa778]

In the British Parliament we have so far gotten this far on the issue: Source

"The Department has no current plans to directly commission research on this issue. However, the Medical research Council has designated myalgic encephalomyelitis/chronic fatigue syndrome a priority research area, and will fund proposals of sufficient quality. The UK Blood Services together with the Health Protection Agency are undertaking a study of the prevalence of a rodent virus recently linked to myalgic encephomyelitis, which will be used to inform a risk assessment."

Great. Even if they decide the risk is low ... if the US guys or any others decide the risk is real and very high, then the HPA and UK Blood Services would put itself in a very bad position, legally. Imagine if the say xmrv is nothing to worry about, and then one day someone proves getting sick through contaminated UK blood supply ... I don't know where they stand legally in terms of European courts, if such potential blunder by UK health services could one day be brought before EU legal bodies... not sure but whatever the situation is it does not sound like something HPA can play political games with...

All this of course only IF xmrv is proven to be pathological (by anyone)

 

[ukxmrv]

They will behave as they did with the Hemophilliacs - that was an absolute disgrace and still is.

 

[Advocate]

I don't believe anything short of a smoking gun would shake the shrinks off our backs but ignoring this finding risks creating many more of us which is not what they want. This science makes clear that it is in everyone's best interest - especially the insurance industry, ironically - to identify, diagnose and treat us seriously.

Hi Koan,

Brilliant. It never occurred to me that the insurance industry might not want to create more of us.

 

[Advocate]

Have you seen this encouraging piece by science writer Larry Gilman? It appears on the blog Heaven in my Foot and also on the blog No Longer By Thinking.

Here's a long excerpt, but the whole piece is worth reading.

There has been no vindicating third act yet for the XMRV/CFS theory, but there are at least three reasons to bet on one.

First, getting a zero result where multiple, independent previous studies have got a nonzero result should be a red flag with any new XMRV study, just as it should have been during the Great Mexican Maize Mystery. Zero? Are you sure you’ve taken the lens cap off the camera?

Second, both zero-result studies—the maize study and the UK XMRV study—used tests for the presence of the target gene or virus different from those used in the studies they challenged. In the case of the maize transgenes, this turned out to be the crux of the problem. Whittemore Peterson states that “the recent study published in the U.K. . . . used non-validated PCR and whole blood PCR assays.” [11] Moreover, the UK study did not select candidates for study using the Science study’s standard, thus producing a twofold apples-and-oranges problem.

Third, the UK XMRV study was rushed through peer review in a few days, according to the Whittemore Peterson Institute. [12] [PS: Actually, as a friendly commenter points out, this is according to the online journal where the piece was published: here’s a screen shot from the source:]


Science is done by human beings, not gods or robots. Its glory is that its method of community-scale, independent checking and criticism almost always enables the production of increasingly accurate knowledge, over time, by a group of people—scientists—who are not increasingly wise or perfect. But in the short term, especially where powerful economic and other interests are involved, the data that some people want to see have a tendency to appear—or the data they do not want to see may be long delayed by diversion of funding and other tactics. Reality wins in the end, but the end may be a while in coming.

Extraordinary claims do require extraordinary evidence, and it is easy to be jerked around by a single paper here and a single paper there. But in the case of the XMRV imbroglio, my money is on the Whittemore Peterson people, who have clearly done the more thorough work. In any case, more studies are under way, and if they are of adequate quality, they will settle this dispute—scientifically.

 

[V99]

Advocate.

Excellent stuff, and a battlestar fan too

 

[Julia Rachel]

I AGREE!
Blessings,
Julia

 

[garcia]

Rumor has it that about half of 50 people from UK tested positive for XMRV at WPI. Two people from UK have posted their positive results here on this forum.

Not a rumour. 8 out of 15 (53%) of the UK cohort who tested in December tested positive (which matches up with results on this forum).

 

[Abraxas]

Zero? Are you sure youve taken the lens cap off the camera?

Heh heh! Funny.