The Fight is on...Imperial College XMRV Study

[fresh_eyes]

Hey folks, Kurt says the CDC is releasing its report next week - has anyone else heard about this??

 

[sunshine722]

In her lecture Klimas made a couple of statements that are relevant to this discussion:

This is the first paper. The paper is very exciting. The next step is to validate the paper. The very next step. And this is going to be difficult because what did I say about the prostate work? Two of them said yes, and two of them said no. Now if you talk to the guys who said yes, they’ll say the guys that said no didn’t use the same method to look. That’s science. We do this all the time. We get into big cabals over method. Method, method, method.

And if you see some negative papers coming out, don’t be discouraged. It’s going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together. It’s not: read the paper and then go do it.

 

[_Kim_]

Hi voner

Here is a short take on the study.... nice short explanation of PCR & the politics involved .....

http://neuroskeptic.blogspot.com/

Welcome to the forums

for posting that. I like the last paragraph the best:

Finally, there are stories behind these papers. The first study, that suggested that XMRV causes CFS, was conducted by the Whittemore Peterson Institute, who firmly believe that CFS is an organic disorder and who are now offering XMRV diagnostic tests to CFS patients. By contrast, the authors of the new study include Simon Wessely, a psychiatrist. Wessely is the most famous (or notorious) advocate of the idea that psychological factors are the key to CFS; he believes that it should be treated with psychotherapy.

 

[Dreambirdie]

In her lecture Klimas made a couple of statements that are relevant to this discussion:

And if you see some negative papers coming out, dont be discouraged. Its going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together. Its not: read the paper and then go do it.

That's my sentiments exactly There's bound to be a LOT more controversy and disagreement around XMRV, before the dust has a chance to settle. Unfortunately, with brand new research that's just the way the ball bounces.

It will be interesting to hear what the WPI researchers have to say about it, and I'm SURE that SOMETHING will be said.

Thanks Sunshine722 for posting this.

 

[Eric Johnson from I&I]

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.

 

[I Wanna Be Well]

As a side note, come on, this is not the time for personal attacks or proclaiming that somebody's sickness is "better" than somebody else's. None of us would waste our time here if we were'nt sick. To act like that is to play into the hands of those that wish to destroy you...and it's not very nice.

Hi Sarah, I never said that "my" illness is "better" than Holmsey's, but it could very well be DIFFERENT to his. It's a fact that there are many mis-diagnosed people going around under the impression that they have ME. They quite clearly don't. It's no their fault. It DOES make a massive difference to all of us who DO have ME/CFS though because they get used in studies by people like Wessely that then skews the results in favour of their own biased agenda. Obviously I can't say for sure that Holmsey's illness definitely isn't ME, BUT from his descriptions, for example being able to work etc, it sure doesn't sound like the same illness that I've got. I think I have evry right to say that when someone comes on ME/CFS boards and constantly seems to delight in taking contrary and opposite views to the majority of people on here.

And that's all I'm going to say.

 

[garcia]

We get into big cabals over method. Method, method, method.

I mis-transcribed that! It should be "quibbles" not "cabals". I corrected it, but apparently not in time to make it into the final draft. But definitely a good time to repeat Nancy Klimas's very apt words.

 

[KC22]

Truth will always surface to the top!!! This was said to me a few years back from an "around 80" year old man, Dr. Lerner, who has worked with CFS for over 25 years.
I believe it will come to the light, but as we all know it can take a long, long time. I cannot believe that Dr. Mikovitz, The Cleveland Clinic, of the National Cancer Institute
is going to take this lying down. They are not going to let their work be demolished by a group with motives to negate their discovery.

Our part is to stay aware and respond where we can. The group of people on this site are smart and wise and I know we will do what is needed .

 

[dipic]

Found the thread after having been sent a copy of the paper just published today and have read a selection of the posts (too many to read the whole thing) so bear that in mind if I’ve missed something important that’s been said.

I can’t comment on the science, but it reads well to someone like me…who doesn’t understand it, presumably now that the official version is in the public domain we’ll get feed back on the science employed by qualified people.

From what I’ve read thought, there seems to have been testing done to prove the samples, i.e. artificially introducing MLV and/or XMRV to prove that if it were present at source, it would show.

I know there’s loads of suspicion surrounding this but it strikes me that if it’s an attempt to cover up previous mistakes then all it’s likely to do is discredit those people and institutions involved, and that’s a tad more than the ‘Wessley school’ in this instance.

Regarding the test group selection criteria, are we happy with those? CDC isn’t the Canadian standard, how do we feel about it? Again, trying to be fair, I got my diagnosis by the same means that those in the test group appear to have gotten theirs, and there appears to have been a deliberate removal of anyone with an underlying Psych problem. My interpretation therefore is that they’re testing people who like us, have been grouped under UK-CFS/ME detection criteria, i.e. ‘you don’t have anything else we can find so it must be CFS’.

Despite any doubts about the selection criteria of the group, I feel it’s interesting that there were no hits at all, given the WPI study found 3.75% of controls had XMRV. This leads me to conclude that only the science can be faulty if the study is to be deemed illegitimate, surely there’s no way you can ensure that you’ve screened out the odd random hit? When you couple this up with the German study, who were checking into prostate cancer not CFS, and are therefore presumably free from any doubt regarding conspiracy, it looks like we’re looking at establishing why there are discrepancies in the science, or is CFS geographical, in which case it’s highly unlikely to be causal in CFS, yes?

Look it’s loads of questions again, and I know already that neither my questions or opinions have met with general approval in the past, but truth is I never wanted XMRV, CFS is enough for me to contend with, and so, yes today I’m delighted. Beyond that I’m prepared to believe until proven otherwise that this is good science done in good faith and with my best interests at heart. If you’re not of the same mind then please remember, like you I’m just trying to work my way through this.

Interesting. You seem to have already made up your mind despite the numerous glaring flaws that have been pointed out here.

Whatever helps you cope, I guess. Ignorance is bliss, as they say, after all, right?

 

[Marco]

Regardless of the methodology involved its hard to get past the providence of the research team.

For one who was hounded out of ME research (Wessley) he was the first out of the blocks after the WPI findings and was quite confident that others would fail to replicate the findings. Now here he pops up as co-author.

Now if all Wessley did was provide the subjects (I know the associated issues) this might be understandable given his grip on NHS patients. I just wonder who kicked off the research and who funded it?

The references in the paper are interesting! Some references are in the context of the WPI work; some deal with assay techniques; a great number refer to psycholgical models or ME, CBT, GET etc (for the benefit of whom - are these papers relevant to the discussion or was he priming the virologists?) finally there is a group of papers on the subject of NOT finding 'known retroviruses' in ME patients dating from the early 90s (as XMRV wasn't a known virus until recently - whats the relevance?).

Finally - why publish what they would hope to be perceived as top quality research on a 'vanity publishing' site? Have any of these respected researchers ever published a paper on that site?

PS - A propos the side issue on this thread - Being able to work or not work is not diagnostic of ME at any given time. I managed to work full time for 15 years plus simultaneously completed a part time MSc before my symptoms grew and worsened. Do I have 'organic ME'? No idea until there is a definitive test but I do have all the symptoms.

Cheers

 

[usedtobeperkytina]

Would love to see a quote from Coffin.

Here is the arrogance: We define who has CFS, we decide the primers, we decide the genes to look for, and then if we don't find it, then the problem is yours. It's not what we did. We set the standard.

One thing about it, the line is drawn in the sand. Someone will fall and fall big. WPI, NCI and Cleveland Clinic (Science paper also) or McClure, Wessely and POS. I was thinking that it is McClure that put out the challenge. But I think WPI, particularly Mrs. Whittemore, was the one who said, "This shows it isn't in your head." That was a challenge.

WPI made a response statement yet?

By the way, I can't imagine that Science Journal isn't fully confident of the study they published. It was reviewed for months. They at first didn't want to put it in with the CFS label. I can just hear them, "that's a hot potato. Let's stay away from that as much as we can." So why did they publish it anyway? Only explanation, the study results were solid and compelling. Can you hear the editors now? "We knew this would happen. Now we are in this CFS quagmire where it doesn't matter what you do, you end up with people mad at you and criticizing you."

Tina

 

[jspotila]

CFIDS Association Press Release

The Association is sending out a press release today through a news wire service that will allow us to track pick-ups. It will be posted later today through the CFIDS Link and on the FB/website. Preview quotes:

Kim McCleary “The CFIDS Association of America reviewed the study published in today’s edition of PLoS One. We are concerned about many elements of this study including differences between the patients selected by the two groups, different processes used to collect and test the blood samples, and the rapid nature of the new publication, as evidenced by the three days that separated the dates of submission and acceptance . . . We urge the media and the research and patient communities to view these findings in the context of evolving understanding and to insist upon more rigorous and standardized replication studies before drawing conclusions about the role of XMRV in the pathophysiology of CFS.”

CFIDS Association scientific director Suzanne D. Vernon, PhD, made the following assessment: “The new report from the U.K. should not be considered a valid attempt to replicate the findings described by Lombardi, et al., in the Science article. This paper heavily underscores the need for expedient, yet robust, XMRV-focused research to build upon the results reported this past fall, studies like the one being conducted by the Department of Health and Human Services Blood XMRV Scientific Research Working Group.”

 

[CJB]

(I'll take this off if it's already been posted - getting kinda hard to keep up.)


Source: New Scientist
Date: January 6, 2010
Authors: Clare Wilson and Ewen Callaway
URL: http://www.newscientist.com/article/dn18341-cfs-patients-in-uk-show-no-signs-of-suspect-virus.html


CFS patients in UK show no signs of suspect virus

<s>

At least one US lab is offering to test people with CFS for XMRV,
while websites are abuzz with reports from patients who say they
have been tested and queries about how to obtain zidovudine (AZT),
the antiretroviral drug used to combat HIV.
Health warnings

"These are folks who've just gone and had the test done in a private
lab," says Charles Shepherd, medical adviser to the ME Association
in the UK, which provides support to people with CFS.

In lab experiments reported last month, AZT was found to block
replication of XMRV. But Richard Baker, head of the group that wrote
the official UK guidelines on CFS, warns patients against taking AZT,
which can have side effects. "Anyone who uses it on themselves is
taking a real risk with their health," he says. Mikovits says it is
unlikely to be effective against CFS.


Negative hints

Other researchers are trying to further establish whether there is a
link between XMRV and CFS, but have not yet published the results.
There are hints that these results may also be negative.

The Robert Koch Institute (RKI) in Berlin, Germany, is also examining
the link between XMRV and CFS. In November, its collaborators posted
a short statement on the web saying that CFS patients had so far
"rarely" tested positive for the virus. They later removed the
statement.

According to Norbert Bannert, one of the virologists at the RKI, the
statement was correct, but he adds: "It's not fair to give numbers when
you're at the beginning of the investigation, and the first results
have not yet been confirmed by an alternative test." He declines to
give further details. McClure has also hinted that several studies due
to be published soon have also found no link.

People with CFS who say they have been tested are less restrained.
On one online message board, a handful of people have reported mixed
results: none of 10 patients who used one company's test said they
turned up positive for the virus, while six out of 12 people who took
another set of tests offered by another lab said they were positive
for XMRV.

If the virus link is not borne out, people with CFS are going to feel
seriously disappointed, Shepherd warns. "I think people are going to
feel very, very let down to put it mildly," he says.

--------
(c) 2010 Reed Business Information Ltd.

Looks like they've been visiting us. Hi, Clare and Ewen! And for what it's worth - we're sick and ignored. We've been sick and ignored for a very long time. We're still sick, but at least now we're not being ignored. We just want the truth. Just the truth.

 

[anne]

The CAA release is up on the Facebook page now, and I just posted it over in Time for the Big Talk, II. As I said over there, it's so nice to see them on top of this. This is exactly what we want from them.

I agree with the poster who said that Dr. Vernon has been sounding a lot more positive on XMRV of late.

On one online message board, a handful of people have reported mixed
results: none of 10 patients who used one company's test said they
turned up positive for the virus, while six out of 12 people who took
another set of tests offered by another lab said they were positive
for XMRV.

This is why I'm wondering if these polls are a good idea. Cort cited them in his own blog as reason to cast doubt on XMRV, and he's on our side. There's no way to know who is taking the polls, we don't know if the commercial tests are any good (especially CD, apparently), we know nothing, and yet they are turning up in these articles.

 

[Holmsey]

Brilliant! Just for that I'm adding you to my friends list.

I wish the people with Reeves disease would go and form their own forum where they can discuss their own issues without polluting our cohort.

Tell me which test you and 'I Wanna Be Well' has taken that gives you the authority or the right to insult me, or better still have the courage to tell us all what it is in my post that scares you. If indeed there is such a test, I'll happily take it, pay for it and post my results on this site, clearly if I have something else following that, I'll take my leave.

 

[Robin]

Interesting. You seem to have already made up your mind despite the numerous glaring flaws that have been pointed out here.

Whatever helps you cope, I guess. Ignorance is bliss, as they say, after all, right?

Again, every point of view is welcomed here, even those you don't agree with. Personal attacks will not be tolerated. So far I haven't edited anyone's posts but if this type of response persists, I will.

If you have a problem with any of the issues Holmsley brought up address them directly.

 

[spit]

Ah, the joys of science. I suspect the slugfest will only get uglier from here. Research pissing matches are often meaner than anything.

There's no way at the moment to know what study or studies to place a lot of faith in, but I will say that for any group that published in PLoS ONE to criticize Science for some kind of "hasty" publication takes more hubris than I can easily imagine.

 

[Esther12]

Tell me which test you and 'I Wanna Be Well' has taken that gives you the authority or the right to insult me, or better still have the courage to tell us all what it is in my post that scares you. If indeed there is such a test, I'll happily take it, pay for it and post my results on this site, clearly if I have something else following that, I'll take my leave.

I really don't understand the way some people talk about CFS and ME on here either. The dustbin nature of CFS means that, imo, it is quite likely there are a number of different causes of CFS, but I don't know of any test which allows a clear diagnosis of ME over CFS. It seems as if anyone who thinks that their could be a psychological and behavioural cause for their illness is dismissed as having only CFS, whereas those who are certain their illness is physical proudly proclaim they have ME. That sounds a bit close to Wesseley for my liking - diagnosis according to beliefs.

 

[George]

Thanks JSpot

for taking the time to keep us informed. I really appreciate it. A deep bow to the CAA for taking charge and doing such an excellent job!

Homesly - you're ideals, thoughts and opinions are always welcome. A dissenting and different view is good for debate. (but remember all to debate, not attack!)

 

[Dx Revision Watch]

UK NHS Choices site

http://www.nhs.uk/news/2010/01January/Pages/Virus-link-to-CFS-in-doubt.aspx

Virus link to CFS 'in doubt'

Serious doubt has been cast on the theory that...chronic fatigue syndrome is caused by a new retrovirus, The Guardian reported. The newspaper said researchers from London have failed to replicate findings from the US that suggested a possible role for a virus called XMRV in causing CFS, also known as ME (myalgic encephalomyelitis).

In the new study none of the 186 UK CFS patients tested carried the XMRV virus, in contrast to the US study in 2009, which found that about two-thirds of 101 CFS patients tested had the virus. Why the two studies have different findings is not clear, but the results of the UK study do not support an association between XMRV infection and CFS in UK patients. This highlights the importance of different research groups repeating experiments in different populations.

CFS is a complex disease, and its causes are not well understood. Although an association with XMRV has not been established, this does not rule out the possibility that viral infection is involved. Much more research will be needed in this area.

Where did the story come from?

The research was carried out by Dr Otto Erlwein and colleagues from Imperial College London and Kings College London. The researchers were funded by the South London and Maudsley NHS Foundation Trust, the Institute of Psychiatry and the National Institute for Health Research Biomedical Research Centre. The study was published in the peer-reviewed open access journal PLoS ONE.

The Guardian, Daily Mail and The Independent reported the story. In general, the coverage is balanced and accurate. The headline of the Daily Mail story that British experts say ME virus is a myth might be taken to mean that this research excludes any role for viral infection in CFS/ME, but this research only looked at one virus (XMRV).

What kind of research was this?

This cross-sectional study investigated whether people in the UK with chronic fatigue syndrome (CFS) were infected with the xenotropic murine leukaemia virus-related virus (XMRV). In 2009, a case control study from the US found that more people with CFS carried the virus than people without the condition. The researchers in this study wanted to see if XMRV was similarly common in people from the UK with CFS.

A cross-sectional study design is appropriate for determining how common a particular trait is among a certain group of people. However, neither this study, not the original case-control study could prove whether XMRV potentially caused CFS, as neither would be able to establish whether people with XMRV had been infected before they developed CFS or after. The current study would also not have been able to say whether the XMRV virus was more or less common in people with CFS than in those without it, as it did not include a control group of people without the disease.

What did the research involve?

The researchers enrolled 186 people with CFS who were living in the UK. These people had been medically examined and diagnosed with CFS according to standard criteria, and other potential causes of their symptoms had been ruled out. Blood samples were taken and tested for the presence of DNA from XMRV or a related virus called murine leukaemia virus (MLV). A number of control tests were also carried out to show that the DNA in these samples was intact, that any positive findings were not a result of contamination of their experiment and that their test would identify XMRV if it was present. The inclusion of these controls is important for ensuring that the experiments were working well and were reliable. The researcher who carried out the DNA tests did not know which of the samples came from people with CFS.

The participants, all of whom had been referred to a CFS clinic, were mainly female (62%) with an average age of 39.6 years. They had been unwell for an average (median) of four years (range one to 28 years), and had high levels of fatigue. Few participants were working and about a fifth (19%) belonged to CFS/ME support groups. Just under half of the participants (45%) said that their CFS definitely related to a viral infection and 45% said that it might relate to a viral infection. The researchers suggested that the characteristics of their sample were typical of those seen in CFS patients attending specialist clinical services in the UK.


What were the basic results?

The researchers did not identify XMRV or MLV in the blood from any of the 186 CFS patients tested. Their control tests showed that the DNA being tested was intact, that there was no contamination in their experiments and that when XMRV was present (in a positive control sample containing XMRV DNA) their test detected it.


How did the researchers interpret the results?

The researchers concluded that they found no evidence that XMRV is associated with CFS in the UK. They suggested that the reason for the differences between their findings and those from the US might be due to differences in how common XMRV infection is in the different countries.


Conclusion

This study suggests that the XMRV infection is not common in CFS patients in the UK. A previous case-control study from the US found that about two-thirds of the 101 CFS patients tested carried XMRV, compared to about 4% of 218 healthy controls. This led the researchers from the US study to suggest that XMRV might be the cause of CFS in these patients. The reason for the differences between the US and UK studies is not clear, but the authors of the UK study suggest that it could be due to XMRV infection being more common in the US than in Europe.

The findings of this current study highlight the importance of different research groups repeating experiments in different populations. The study does have some limitations in that it was relatively small and all participants came from one CFS centre in London. Further studies in more participants from different centres in the UK would be useful in determining whether these findings are typical of the UK as a whole.

Even if this study had found significant levels of XMRV in CFS patients, it would not have been able to prove the virus actually caused the condition. This is because, like the original US case-control study, it could not establish whether people with XMRV had been infected before they developed CFS or after.

The current study would also not have been able to say whether the XMRV virus was more or less common in people with CFS than those without, as it did not include a control group of people without the disease.

The results of this UK study do not support an association between the XMRV virus and CFS in UK patients. The researchers do not rule out a role for all viruses in CFS, and say that prospective epidemiological studies have confirmed that certain infective agents, for example Epstein Barr virus, are unequivocally associated with subsequent CFS, even if the mechanisms are unclear and almost certainly multi factorial. CFS is a complex disease, and its causes are not well understood. Much more research will be needed in this area.

Links to the headlines

Research casts doubt over US chronic fatigue virus claim. The Guardian, January 06 2010

British experts dash ME breakthrough hopes following American promise of new treatment. Daily Mail, January 06 2010

Scientists' claim to have found the cause of ME is 'premature'. The Independent, January 06 2010

Links to the science

Erlwein O, Kaye S, McClure MO, et al. Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. PLoS ONE, 2010; 5/