The Fight is on...Imperial College XMRV Study

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
New Scientist 06 January 2010

(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


The theory that chronic fatigue syndrome could be caused by a
virus that jumped from mice to people has been dealt a blow by a
British study that has found no evidence of the virus in people
diagnosed with CFS. Scientists are also warning people with the
condition of the dangers of dosing themselves with antiretroviral
drugs.

CFS affects more than a million people in the US and a quarter
of a million in the UK. Its symptoms include persistent, severe
tiredness, but its cause remains mysterious and contentious.

The debate on its origins took a new twist in October, when DNA
from xenotropic murine leukaemia virus-related virus (XMRV) was
found in the blood of about two-thirds of 101 people with CFS,
compared with just 4 per cent of healthy people. The researchers,
led by Judy Mikovits of the Whittemore Peterson Institute in Reno,
Nevada, suggested that XMRV might be causing CFS.


Missing virus

Now a second study, led by Myra McClure of Imperial College London,
has failed to find XMRV in blood samples from 186 people in the UK
with CFS. "We do not share the conviction that XMRV may be a
contributory factor in the pathogenesis of CFS, at least in the
UK," McClure's team says.

XMRV is a retrovirus, and viruses of this type have a history of
claims linking them to diseases, which have later been questioned
- about 25 at the last count.

Mikovits stands by the conclusions in her paper. She suggests that
XMRV may be less common in Europe and so might not be causing cases
of CFS there.

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.
 
R

Robin

Guest
It's ok Holmsey, they probably only used people like yourself in their study, i.e, those who don't have neurological ME and have a fatigue state caused by psychological issues. Therefore their findings don't apply to those of us that have ME in the UK. I'm glad that you don't have to worry about having XMRV in your body anyway. I hope you can get yourself better. I've heard that the Lightning Process is good for people like yourself. Meanwhile let those of us on here who are physically ill with ME/CFS get on with trying to find the answers to our physical illness. Bye bye.

I Wanna Be Well, the sarcasm is not necessary. Make a point if you want to but do not attack other members.

All points of view are welcome here, even if they are not shared by yourself.
 

Parismountain

Senior Member
Messages
181
Location
South Carolina
How about something really really simple. Our Mikovitz study had 101 CFS patients. Have Dr. Mikovitz's lab run her tests again on those 101 people blinded then defend the results. If the results are consistent (using the original Science published protocol, not the newer, better finding protocol), IF THE RESULTS ARE CONSISTENT - I don't care what virus they found, they sure did find a screening diagnostic test for CFS or at least a form of CFS. Yeah maybe XMRV virus is slightly different in CFS than the prostate kind, or maybe it's a different virus and they haven't figured that out yet or maybe it's not a virus at all, just a fluke but if they can consistently replicate using blinded then we can at a minimum salvage a diagnostic tool.
 

alice1

Senior Member
Messages
457
Location
Toronto
Hey "I Wanna Be well' I think your frustration is getting the better of you.We all share sypmtoms and have debilitating symptoms that differ.
We all need to have 1 voice and support one another.
 

Esther12

Senior Member
Messages
13,774
I am an advocate of fair debate in science, so if you are going to criticize the replication studies, then please also look critically at the WPI study. That is all I am saying.

I agree. I understand Wessely's involvement making people especially suspicious, but there were problems with the Science paper too (again it really wasn't clear how patients were selected, it was unblinded).

This new paper certainly doesn't prove that there's no connection between CFS and XMRV (in Britain or anywhere else) as the authors seem to think, but it does seem to show that XMRV in CFS is not picked up by the test they were using. It would have to be utterly fraudulent for Wesseley's selection criteria to have generated a patient group where no-one was positive for XMRV if the WPI results were to hold up. I don't think he'd be willing to do this.

From my position of ignorance, looking at the varying test results for XMRV in prostate cancer and CFS, it does look as if the tests are not as reliable as we think. We'll have to wait and see for more results. If there is no replication, even from those co-operatingwith the WPI, then we'll know the Science paper was some how wrong. The paper in Science seemed solid, it would be very surprising if it didn't lead on to anything. Contamination of smaples is possible, but from my understanding they have already looked carefully into this possiblity, and shown it was not a factor?

Go to the PLOSONE site where the stupid study is, register as a user and then add your one star negative rating and your comment about this stupid study. OPEN YOUR MOUTHS! Take your shot at this study and make sure that everyone knows that if it is a WESSELY STUDY IT WILL BE NEGATIVE REGARDLESS - You UK people have to take this dumb SOB on and damage his credentials, over and over and over. Just as we in the US are doing to the "Wessely twin moron", William Reeves. Discredit these psychobabblers everywhere you can.

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519

I don't think you should do this unless you're qualified in a relevent field or feel capable of making informed commentry (I'm not!)

It could just feed in to the prejudices some doctors have about those with CFS.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
UK Action for M.E. statement + ICL Press Release

UK Action for M.E. statement + ICL Press Release


http://www.afme.org.uk/news.asp?newsid=720

Action for M.E. | 6 January 2010

News

Link between XMRV and CFS?


New UK research claims there's no link between XMRV and CFS.


Research published today from Imperial and King's College London announces that they have been unsuccessful in finding the XMRV retrovirus in a sample of British patients with chronic fatigue syndrome.

Last year, as reported on our website, the Whittlemore Peterson Institute in America found that 68 out of 101 patients with the illness appeared to be infected with the virus, compared to 8 out of 218 healthy controls.

The recent UK study analysed tissue samples from 186 patients with CFS using sensitive molecular testing techniques, but found no evidence that they had the XMRV virus.

In a press release issued by Imperial College, Professor Myra McClure, one of the authors of the study, said:

"Our research was carried out under rigorous conditions - we looked at samples from well-studied patients, and we used very sensitive testing methods to look for the virus. If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any of the murine leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination.

"We are confident that our results show there is no link between XMRV and Chronic Fatigue Syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with anti-retrovirals. Our recommendation to people with Chronic Fatigue Syndrome would be not to change their treatment regime, because our results suggest that anti-retrovirals would not be an effective treatment for the condition," added Professor McClure.


Sir Peter Spencer, Action for M.E. says:


"Action for M.E. is disappointed to hear about these findings but no single small-scale study can be conclusive and the fact remains: American researchers found XMRV virus in 68 out of 101 people with chronic fatigue syndrome. Were those samples contaminated - or were those people susceptible to XMRV because they had CFS?

"What we need is more research involving large numbers of carefully characterised patients at a number of sites, preferably using fresh, not stored, blood samples. We also need studies on large numbers of both healthy people and people with other conditions.

"250,000 British men, women and children have this devastating illness. They need answers, better treatments and a cure."



Imperial College PRESS RELEASE

http://www.afme.org.uk/res/img/resources/Imperial College London News Release XMRV.pdf

Imperial College London News Release

Wednesday 6 January 2010

New virus is not linked to Chronic Fatigue Syndrome, suggests UK
research


New UK research, published today in PLoS ONE, has not reproduced previous
findings that suggested Chronic Fatigue Syndrome may be linked to a recently
discovered virus. The authors of the study, from Imperial College London and
King's College London, say this means that anti-retroviral drugs may not be an
effective treatment for people with the illness.

An estimated three in 1000 people have Chronic Fatigue Syndrome (CFS), or
myalgic encephalomyelitis (ME), experiencing severe physical and mental fatigue
that is not alleviated by rest, together with other symptoms such as muscle pain,
headache, joint pain and depression. Diagnosing CFS is difficult, as symptoms
vary and there is no standard test. The fundamental cause of CFS is unknown
and it is usually treated using rehabilitation techniques such as cognitive
behavioural therapy or graded exercise therapy.

In October 2009, a group of US scientists published research in the journal
Science that suggested that a recently discovered virus called XMRV could be
linked to CFS. In their study, 68 out of 101 patients with the illness and 8 out of
218 healthy controls appeared to be infected with the virus.

However, in today's study, researchers found no evidence that patients with CFS
had the XMRV virus, after analysing tissue samples from 186 patients with CFS
using sensitive molecular testing techniques.

This more recent analysis showed no molecular evidence for XMRV in any of the
samples from CFS patients. The researchers say this means that anti-retrovirals
should not be used to treat CFS, as they would be unlikely to have an effect on
the symptoms. However, several labs in the US now offer CFS patients
treatments based on the earlier findings that linked the condition with XMRV.
Professor Myra McClure, one of the authors of the study from the Division of
Medicine at Imperial College London, said: "Our research was carried out under
rigorous conditions - we looked at samples from well-studied patients, and we
used very sensitive testing methods to look for the virus. If it had been there, we
would have found it. The lab in which we carried out the analysis had never
housed any of the murine leukaemia viruses related to XMRV, and we took great
care to ensure there was no contamination.

"We are confident that our results show there is no link between XMRV and
Chronic Fatigue Syndrome, at least in the UK. The US study had some dramatic
results that implied people with the illness could be treated with anti-retrovirals.
Our recommendation to people with Chronic Fatigue Syndrome would be not to
change their treatment regime, because our results suggest that anti-retrovirals
would not be an effective treatment for the condition," added Professor McClure.
After reading the US study, clinical researchers from King's College London sent
blood samples from 186 CFS patients to the Imperial Retrovirology Laboratory
team. King's has been running an NHS service for CFS patients for nearly twenty
years, and the previously stored samples came from patients had been fully
investigated and examined, meaning that CFS was the correct diagnosis.

The Imperial scientists extracted the DNA from the samples and analysed it
using a sensitive technique, called Polymerase Chain Reaction (PCR), which can
locate tiny fragments of virus DNA. The scientists analysed control samples of
water at the same time to ensure there was no contamination. They also looked
for a specific marker fragment of human DNA in the sample to make sure the
technique was working.

The water controls contained no DNA, showing that the samples were not
contaminated. All the test samples, from patients and healthy controls, contained
the human DNA they looked for, suggesting the technique was working well.
Dr Anthony Cleare, Reader in Psychiatric Neuroendocrinology, one of the
authors of the study from the Chronic Fatigue Syndrome Clinic at King's College
London, said: "Chronic Fatigue Syndrome is a serious and debilitating condition.

It can also be extremely frustrating for people with the illness, as we have yet to
identify its fundamental cause, or come up with any definitive treatments. The
recent US study generated real excitement among doctors and patients alike as
it seemed to open up a new line of research. Unfortunately, we have not been
able to replicate those findings."

"It is important to emphasise that today's findings do not invalidate all previous
research, some of which has shown that CFS can be triggered by other infective
agents, such as Epstein Barr Virus or Giardia parasites. As ever in science, no
single study is conclusive and there are lots of other research groups working on
this at the moment. We await their results with interest," added Professor Simon
Wessely, another author of the study from the Chronic Fatigue Syndrome Clinic
at King's College London.
-Ends-

Notes to Editors:
1. "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue
Syndrome" PLoS ONE, Wednesday 6 January 2010.
 

Eric Johnson from I&I

Senior Member
Messages
337
Blimey

Fresh Eyes,
PLoS ONE is the only widely-read/followed journal that is only "sorta" reviewed. Basically they review for any obvious methodological errors. And I think it is done in-house, not by peers.

This thing is a bummer. The score is now two to zero when you include the Koch-Institut. (The initial paper doesnt count in the 'score'.)

One thing about it is that they only used PCR. I would find in more convincing if theyd also used serology or something, like Mikovits.

Not that I'm gonna be totally convinced by a single paper. I want to hear with the other 17+ labs have to say. There is a ways to go here. But Im moving my confidence that XMRV causes CFS down to 51%. The first 50% is my objective read -- I add in another 1% because I want it to be true!
 

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
I'm wondering about the Swedish researcher who developed his own (I think?) test and the report that some of Dr de Meirliers patients were testing positive. That can't be blamed on contamination so easily, can it?
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
But Im moving my confidence that XMRV causes CFS down to 51%. The first 50% is my objective read -- I add in another 1% because I want it to be true!

Oh yea of little faith! Eric, you'll be interested to hear I'm moving my confidence level up from 67% to 73%. Because this paper was rushed through and is done so shoddily I have no qualms that it will be proved false in the fullness of time.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
It's ok Holmsey, they probably only used people like yourself in their study, i.e, those who don't have neurological ME and have a fatigue state caused by psychological issues. Therefore their findings don't apply to those of us that have ME in the UK. I'm glad that you don't have to worry about having XMRV in your body anyway. I hope you can get yourself better. I've heard that the Lightning Process is good for people like yourself. Meanwhile let those of us on here who are physically ill with ME/CFS get on with trying to find the answers to our physical illness. Bye bye.

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.
 

Min

Messages
1,387
Location
UK
well said I wanna be well!.

Where is the information available that Imperial College were not looking for the same xmrv (sort? variety? I'm no scientist)as the WPI found in M.E./CFS please?
 
G

George

Guest
Blind studies and other bits.

I wanted to take a moment to address CharityFundraisers question about the differences between the blinded and non blinded studies. The original article in Science was not about CFS, it was not a "medical" study to show causality. If it had been Science would not have taken it. That's not their bailiwick.

The original study by the WPI was designed to prove the existence of XMRV as a novel retrovirus that had jumped species.

The fact that the group used in the study just happened to be CFS patients was totally incidental, they could have used prostate patients or just a group of healthy individuals. Science specifically asked them to remove the "CFS" label from their patient population so as not to confuse the issue of proving the existence of a retrovirus in the human population. The WPI argued that with such a high rate of infection that the medical world would want to know who the patient population was anyway. What was the difference in publishing the groups (CFS) name.

The work was so well done that Science accepted the work with the CFS label in tack. To the medical world the paper was never about CFS/ME it was about proving XMRV was the next big scientific area of study. That it was real, a potential threat to people, and not a contaminate.

The next step is to replicate the findings using the exact same protocols. THEN and only then would you begin doing blind and double blind studies to prove "causality", XMRV causes CFS because in a blinded study only the CFS patients had the virus.

I hope this answers some questions for you.
 

Eric Johnson from I&I

Senior Member
Messages
337
Kurt, I wonder what you refer to here? The Wessely paper doesnt use prostate cancer controls, just DNA samples of XMRV. And the Koch paper we dont have any details on yet.

I don't know whether XMRV was present but not found, or simply not present, but I do know that these replication tests get positive hits on prostate cancer controls. So they can find XMRV in every run and so when they do not find it in CFS that is hard to explain away.
 

Esther12

Senior Member
Messages
13,774
Where is the information available that Imperial College were not looking for the same xmrv (sort? variety? I'm no scientist)as the WPI found in M.E./CFS please?

They were looking for the same XMRV, but they used a different part of its genetic code to search for it. This shouldn't matter though, as the WPI ran the entire genetic sequence of the virus they found. It seems very likely that one of the studies is flawed in some way.

I think. I'm just regurgitating stuff I remember reading, so could be very wrong.
 
R

Robin

Guest
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.

I Wanna Be Well was being sarcastic.

This forum is open to everyone. We only ask that people be civil and refrain from personal attacks.
 

jspotila

Senior Member
Messages
1,099
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 grew up in a household of scientists, and the only way good science emerges is the free exchange of ideas and opinion. Silence from WPI would probably play one way in the CFS community, but a different way altogether in the scientific community. IMHO, I'm not sure it helps us reach the ultimate goal for WPI to refuse comment. (and maybe they already have commented, I'm just trying to keep up!)
 
Back