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The Fight is on...Imperial College XMRV Study

MEKoan

Senior Member
Messages
2,630
Re S Vernon

Orla wrote
Simon Wessely and Anthon Cleare do not recognise ME/CFS as an organic condition. They accept there can be a viral trigger (mostly probably because it cannot be denied!) but they think that it is abnormal beliefs and behaviours that keep us unwell.

I actually think that was pretty cagey. They all but said it and she held them to it. Yeah, they probably don't really mean it but she held them to what they said. Go Vernon!

Hvs wrote
It's too bad that she didn't draw attention to the poor subject pool, which appears to be Reeves Disease/Oxford people who aren't necessarily sick.

I think this was pretty cagey, too. Vernon gave them nothing to refute. Smart girl.
 

Kati

Patient in training
Messages
5,497
JayS beat me to it! I just checked email and got the CAA article on the new study, came over here to share it with y'all, and you already had 11 pages on it! Clearly, I need to go back to bed.

But I'm glad you are pleased with Dr. Vernon's discussion of the study. http://www.cfids.org/cfidslink/2010/010603.asp

Like I have said in other threads, the Association is working very hard on communications and other XMRV-issues. We never give up, we never let up, and we always always strive to improve how we do all the work we do. Without a doubt, there will be more studies and information coming out over the next few months, and it is a priority for the Association to share and analyze this information as it becomes available.


Thank you to Suzanne Vernon and CAA for very quick response and analysis on this very negative study. I think we can all breathe in relief and sore people in the UK have to be really stressed out right now...
 
Messages
77
Location
Leicestershire, England.
As Carl Sagan put, science in its best form is self regulating, when a study is published others will try and rip it apart. That's a healthy look as it means that only the most fool-proof and evidence based studies can get through. So lets hope those pirhanas are out in full force when they wake up tomorrow morning to this new study. ;)
 
K

_Kim_

Guest
What I wanna know is:

Who are these 186 patients? And why are they helping Simon Wessely smash their hopes of getting treatment?
 
G

George

Guest
Dang we are gooooodddd!

Great catch Valia

This just in from Google Alert

http://www.guardian.co.uk/lifeandstyle/2010/jan/06/chronic-fatigue-syndrome-xmrv-virus



Research casts doubt over US chronic fatigue virus claim


UK study fails to find proof of headline-grabbing American study into test for ME/CFS



* Sarah Boseley
* The Guardian, Wednesday 6 January 2010
* Article history


Serious doubt has been cast on the theory that made headlines around the world last October that chronic fatigue syndrome, or ME, is caused by a new retrovirus.

Scientists at Imperial and King's universities in London have attempted to replicate work carried out in the US and published in the journal Science last autumn. But they found not one of the 186 patients they studied had a trace of the novel virus, called XMRV, in their blood samples.

The theory, which made headlines around the world last October, gave hope to many. About three in every 1,000 people, possibly more, suffer from chronic fatigue syndrome (CFS), formerly known as myalgic encephalomyelitis (ME), which is a condition described one of the authors of the paper, Dr Anthony Cleare, reader in psychiatric neuroendocrinology at King's, as serious and debilitating and extremely frustrating for sufferers who do not know its cause.

The study in Science, by Vincent Lombardi and colleagues at a small private pathology laboratory in Reno, Nevada, sent many patients hurrying to doctors for tests and antiretroviral drugs.

Lombardi and his team reported that they had found the virus XMRV in 67% of the CFS patients they tested. Later they said they had found it in 95% of patients. Lombardi has devised and sells a test for the virus in north America.

Scientists around the world embarked on their own tests, and Dr Cleare and his colleagues are the first to publish results. "If this research is replicated, it is potentially a huge breakthrough in understanding this condition," he said.

King's College hospital runs a specialised CFS/ME clinic. The researchers selected blood samples from 186 patients who were, they said, typical of those who attend. They had suffered for years, were very disabled by the disease and more than 90% said their illness definitely or probably started after a viral infection.

They sent the samples to a team at Imperial's retrovirology labs. Professor Myra McClure, from the division of medicine at Imperial College London and one of the authors of the study published today by PloS One (Public Library of Science), said: "Our research was carried out under rigorous conditions. 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 our results show there is no link between XMRV and CFS, at least in the UK." The authors say there is no evidence to justify testing people with CFS for the virus or putting them on drug treatment.

O.K. who wants to e-mail this nice reporter and point her in the direction of Dr. Susan Vernon's statement???? Anybody, Anybody????

@Koan - I agree with you Koan, Dr. Vernon handled this very well.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
Wait a second.. none of the people here at PR that are from the UK have been tested for XMRV right? I need to see what your tests come out as and you need to be tested by the WPI itself.

Some of us have sent our blood to VIP for XMRV testing (using a lab in London). We await results.

I presume that if some are positive Wessely and co will argue that it is a mouse contaminant or similar?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Also, didn't Mikovits say that she had tested 500 PWC in London back in October and that the results were turning out the same numbers as in the U.S. for infection of XMRV?

Levi said: Also, ask yourself what a psychiatrist is doing by signing on a retroviral research study? I did not see any psychiatrists co-authoring the Science article.

Excellent point Levi! Especially a psych who claims he has distanced himself from ME.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
This just in from the Independent:

http://www.independent.co.uk/news/s...und-the-cause-of-me-is-premature-1859003.html

Scientists' claim to have found the cause of ME is 'premature'

British researchers say US team should have waited for more evidence of viral link before publishing findings

By Steve Connor, Science Editor

Wednesday, 6 January 2010

British scientists have failed to find a link between a new kind of retrovirus and chronic fatigue syndrome in a study that contradicts previous findings by American researchers claiming to have found a possible viral cause of the debilitating condition.

The UK scientists could not detect a recently discovered virus called XMRV in any of the blood samples collected from 186 patients with chronic fatigue syndrome, which is also known as myalgic encephalomyelitis (ME). The researchers believe this demonstrates that XMRV is not implicated in the illness, at least not in Britain.

One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link.
Related articles

* Steve Connor: Researchers must work together
* Search the news archive for more stories

"When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure, a virologist at Imperial College London and a leading member of the British research team.

Chronic fatigue syndrome affects about three in every 1,000 people and results in severe physical and mental exhaustion. After the release of the apparent link with XMRV, many patients have asked their doctors about being tested for the virus and whether they should be taking antiretroviral drugs.

The earlier study, published last October, was carried out by a team led by Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy "controls" drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition. Dr Mikovits told The Independent at the time that further blood testing had found the virus in as many as 95 per cent of patients with chronic fatigue syndrome. She also said that preliminary testing on a batch of blood samples sent from Britain showed that the "same percentages are holding up".

However, Professor McClure's study, published in the online journal Plos One, failed to find any evidence of the XMRV's DNA in blood samples taken from 186 patients who had been diagnosed with chronic fatigue syndrome for at least four years. She also failed to find any virus related to XMRV.

"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 antiretrovirals. Our recommendation to people with chronic fatigue syndrome would be not to change their treatment regime, because our results suggest that antiretroviral would not be an effective treatment for the condition," Professor McClure said.

The British study was carried out under the most rigorous testing conditions that minimised the risk of cross contamination, Professor McClure said. The testing was also conducted "blind" meaning the scientists involved did not know which samples came from patients and which came from the healthy controls until the end of the experiment.

The DNA test used to detect the presence of XMRV in the blood samples is so sensitive that it would have shown up positive if just one molecule of the virus's genetic material had been present in the blood samples. However, the tests were only carried out on blood. It is possible the XMRV virus integrates its genetic material into other tissues of the body, although this is not supported by the American findings.

Anthony Cleare, reader in psychiatric neuroendocrinology at King's College London, which collected the blood samples, said the apparent link between chronic fatigue syndrome and XMRV generated a lot of excitement among doctors and patients but the latest study had failed to replicate those results.
 

parvofighter

Senior Member
Messages
440
Location
Canada
I'm a donkey on the edge

Geez Weldman and George - right back atcha! :D:D:D:D

Some interesting stuff! Thanks for digging it up... P.S. remind me never to make you my enemy.

I hang my head in shame. Seriously tho - I'm not trying to scare folks - just inject humor while snuffing (snuffling) out some silliness when it threatens to get us off the scientifically rigorous track. After 11 years with ME/CFS, living in the mountains of credible research on viral complications - and the ludicrous medical denialism that goes with it, I am indeed a nerd on a mission.

I keep thinking of Eddy Murphy in Shrek when he says, "I'm a donkey on the EDGE!"

shrekdonkey.jpg
And George, as another canophile - love the doggy references! Living here with 12 canine paws - haven't been able to walk 'em in years. Can't WAIT till I can! (wagging tails, more snuffling) :Retro smile::victory:
 
G

George

Guest
Time to marshall the troups!

The article has gone viral, I've got 5 alerts on my Google for articles already quoting the BBC article. We knew it would happen. So starting tomorrow or tonight for anyone who's up to it we need to start e-mailing the the CAA rebuttal to as may as we can. A good reporter reports both sides of a story so the faster we get it out the faster they can amend their articles.

What da ya say, ya all game??? Woof!!!
 

MEKoan

Senior Member
Messages
2,630
Where did they almost say it, Koan?

This finding, if confirmed, would have a profound effect on the understanding and treatment of an incapacitating disease affecting millions worldwide
and later

... they were markedly unwell.
yes, they are probably thinking "I'm not crazy, I'm just a little unwell" and that we are incapacitated because we are barking but that is not what they say. What they say is more reasonably interpreted as referring to an organic illness than an illness belief. One can think one is unwell but that is not the same thing as being, according to professional doctors :mask:, markedly unwell. They said it.

:victory:
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
CALL FOR PRESS RELEASE FROM CAA/VERNON

I hope that the CAA will issue a press release written by Dr. Vernon repsonding to the PLoS study. The statement on the CAA website, with some tailoring, should be fine.

They should blanket all the UK newspapers as well as the major US papers/media as quickly as possible. We know from politics how important it is to respond to opponents in the same news cycle. Getting the press release out tomorrow, first thing, could stop biased reporting of the study. It's important, for funding and exposure, to maintain a perception in the mainstream media that XMRV could still be important to ME/CFS, or a subset of it.

This is especially urgent in light of the recent Guardian aritlce, posted above, which shows the Wessely PR machine is already in action.
 

Lily

*Believe*
Messages
677
:scared: I can't leave this thread. I've got to pee.

Ha! I know what you mean.......there's been an average of 26 posts/hour for the last 6 hours!!! Great ones too!!! You guys are all AWESOME!!:victory::sofa::victory:
 

CJB

Senior Member
Messages
877

From the abstract:

Quote

advent of PCR in particular has dramatically enhanced our ability to detect novel viral sequences in human tissues. However, DNA amplification techniques have also increased the potential for false-positive detection due to contamination.Unquote
 

MEKoan

Senior Member
Messages
2,630
CALL FOR PRESS RELEASE FROM CAA/VERNON

I hope that the CAA will issue a press release written by Dr. Vernon repsonding to the PLoS study. The statement on the CAA website, with some tailoring, should be fine.

They should blanket all the UK newspapers as well as the major US papers/media as quickly as possible. We know from politics how important it is to respond to opponents in the same news cycle. Getting the press release out tomorrow, first thing, could stop biased reporting of the study. It's important, for funding and exposure, to maintain a perception in the mainstream media that XMRV could still be important to ME/CFS, or a subset of it.

This is especially urgent in light of the recent Guardian aritlce, posted above, which shows the Wessely PR machine is already in action.

Yes! Everything about this study, including first the secrecy and then the huge press, is all about PR. Now, our PR arm must respond effectively.

We must also remember that, so long as good science can continue, we will be alright at the end of the day. Could be a long day, though.