• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Fight is on...Imperial College XMRV Study

G

George

Guest
Just in from the BBC http://news.bbc.co.uk/2/hi/health/8441491.stm

The actual paper is here, ( Thank you Ester12 for finding it!)

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


UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.
The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.
They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports.
Experts said the latest findings would be a bitter disappointment to many.
They said more trials were under way and when these report in coming months, scientists will be able to draw more firm conclusions.
Work in the US, published in Science, had found the retrovirus in 68 of 101 CFS patients.
The UK team say the conflict between the two studies might be down to differences between the patients enrolled or the way the research was conducted.
o.gif
start_quote_rb.gif
We need to be extremely cautious until we know more
end_quote_rb.gif



Dr Charles Shepherd
The ME Association

Or there might be different geographical types or strains of XMRV.
Regardless, they say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful.
The drugs may do more harm than good, they say.
Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."
She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.
"If it had been there, we would have found it."
'Disappointing'
Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.
o.gif
ME FACTS
Causes chronic fatigue and muscle pain
Impairs immune system
Does not improve with sleep
Affects more women than men
A controversial condition that some have doubted as a genuine physical illness

The charity Action for ME said it was disappointing to hear about these findings, but said no single small-scale study could be conclusive.
Dr Charles Shepherd, of The ME Association, said it was important to remain open-minded.
"We need to be extremely cautious until we know more. There has been enormous interest in this from patients.
"Some have been led into believing the cause and a test has been discovered and that treatment is just round the corner and that is not the case.
"Over the next few weeks and months we will have more results and then we can come to a conclusion.
"If it turns out that XMRV is important, we will have to start looking at whether it is worthwhile testing for it and treating it."
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Gentlemen, the game is afoot. From the above article:

"Coauthor Simon Wessely says ..."

Let's play a game of Simon Wessely Says girls and boys.
 

Min

Guest
Messages
1,387
Location
UK
Another cover up. What else do we expect from Prof Wessely.

They almost certainly selected patients using the Oxford criteria; this excludes patients with neurological M.E./CFS but includes many with fatigue caused by mild depression.
 

MEKoan

Senior Member
Messages
2,630
Yes, we do well to remember, among other things, that Oxford excludes people who are sick :ashamed: They may save face by concluding that people with "CFS" don't have XMRV but people with a real illness do. Or not.:worried:

Also, yes, I am heartened by the zero XMRV finding and Levi's take on that.
 
K

Katie

Guest
So much for Wessely not following ME that much anymore. Well at least people with depression can rest assured they don't have XMRV. Wessely wanted this study out here asap, be the first, nip it in the bud. God the headline on BBC is so damning too. Charles Shepard didn't do that great, or what he said wasn't printed, why wasn't he attacking the methodology? That what Wessely did right away to the WPI study, he's prattling on about people being "led", I don't effing care what he thinks about our expectations!! I want to know who Wessely and his cronies picked out as ME patients and their controls, I want to pick their science apart and their methodology, not hear about how we're ahead of ourselves! Science, science, science. Pitifully small study too, McClure, you answer no questions.


Bring on the next study. Please.
 
G

George

Guest
9 search engins later

O.K. I tried all 9 search engines, Google, Yahoo, Bing, NovoSeek (medical info), HealthVisit, HonSearch, SerpAnalytics, AltaVista and by mistake Apple iStore (grins) and of Course I did all that after going to PLoS One Journal and checking there for the article in question. Nothing. . .big fat zero. WTF???

So Wessley et al was so excited to put the information out that they forgot to actually publish the paper????

Maybe someone else can find it. Maybe I just wizzed right by it. . .
 

Nina

Senior Member
Messages
222
Oh boy, what an end to an already horrific day. Although this was to be expected, I didn't see this one coming so fast.

I wonder if this was the study in co-operation with WPI? I think Annette Whittemore (or was it Dr. Mikovits) mentioned that they were coordinating studies with the UK, amongst others. Something tells me (maybe HOPE) it's not this one, though!! We'll be in for a long ride until we will have an idea of where this might finally take us.

How could we make sure the selection criteria of this (not so small btw) group will be revealed?
 
G

George

Guest
No,

George, its not there yet. They embargoed it, maybe? ;)

Damn good question.

Hey Nina, no the WPI is working with Dr. Kerr. This was totally independent and not even on Cort's List.
 

CJB

Senior Member
Messages
877
The fact that they found zero XMRV is actually good. Points to testing methodology problems.

Looks like they used the Cooperative Diagnostics PCR test for their study. Funny, I sent my blood in to VIPdx in the beginning of November, and still have no result. They are hoping to finish the test in a couple of weeks or so.

Can't wait for the published study, it will make interesting reading, particularly the disclosures of financial interests by Wessely et al.

I agree. You would think that if the methodology were sound, they would've at least found the 3-4% found in the healthy controls in the WPI study.
 
Messages
77
Location
Leicestershire, England.
Research finds no proof that a virus is the cause of ME

http://news.bbc.co.uk/1/hi/health/8441491.stm

First post here, sorry if I've done anything wrong. But just thought this was worth putting on the main forum page instead of the media discussion for the possible implications it could have. I'm not surprised the study did not yield any results as heck. It's simon wesseley. Though I'm very down-hearted about it still. Added my bold for those who can't read through all of it. :)

UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.

The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.

They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports.

Experts said the latest findings would be a bitter disappointment to many.

They said more trials were under way and when these report in coming months, scientists will be able to draw more firm conclusions.

Work in the US, published in Science, had found the retrovirus in 68 of 101 CFS patients.

The UK team say the conflict between the two studies might be down to differences between the patients enrolled or the way the research was conducted.

We need to be extremely cautious until we know more
Dr Charles Shepherd
The ME Association

Or there might be different geographical types or strains of XMRV.

Regardless, they say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful.

The drugs may do more harm than good, they say.

Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."

She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.

"If it had been there, we would have found it."


'Disappointing'

Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.

ME FACTS
Causes chronic fatigue and muscle pain
Impairs immune system
Does not improve with sleep
Affects more women than men
A controversial condition that some have doubted as a genuine physical illness

The charity Action for ME said it was disappointing to hear about these findings, but said no single small-scale study could be conclusive.

Dr Charles Shepherd, of The ME Association, said it was important to remain open-minded.

"We need to be extremely cautious until we know more. There has been enormous interest in this from patients.


"Some have been led into believing the cause and a test has been discovered and that treatment is just round the corner and that is not the case.

"Over the next few weeks and months we will have more results and then we can come to a conclusion.

"If it turns out that XMRV is important, we will have to start looking at whether it is worthwhile testing for it and treating it."
 
Messages
59
Location
Bognor UK
Research finds no proof that a virus is the cause of ME UK BBC News

http://news.bbc.co.uk/1/hi/health/8441491.stm

UK scientists say they can find no proof that a particular virus is the cause of chronic fatigue syndrome (CFS) or ME, contrary to recent claims.

The Imperial College London team say they want to share the findings as some patients are pinning their hopes on drugs to fight the virus called XMRV.

They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports.

Experts said the latest findings would be a bitter disappointment to many.

They said more trials were under way and when these report in coming months, scientists will be able to draw more firm conclusions.

Work in the US, published in Science, had found the retrovirus in 68 of 101 CFS patients.

The UK team say the conflict between the two studies might be down to differences between the patients enrolled or the way the research was conducted.

We need to be extremely cautious until we know more
Dr Charles Shepherd
The ME Association

Or there might be different geographical types or strains of XMRV.

Regardless, they say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful.

The drugs may do more harm than good, they say.

Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."

She said they had used extremely sensitive DNA testing methods, called polymerase chain reaction, to look for the virus.

"If it had been there, we would have found it."

'Disappointing'

Co-author Professor Simon Wessely said the findings did not invalidate all previous research, some of which has shown that CFS can be triggered by other infectious agents, such as Epstein Barr Virus.

ME FACTS
Causes chronic fatigue and muscle pain
Impairs immune system
Does not improve with sleep
Affects more women than men
A controversial condition that some have doubted as a genuine physical illness

The charity Action for ME said it was disappointing to hear about these findings, but said no single small-scale study could be conclusive.

Dr Charles Shepherd, of The ME Association, said it was important to remain open-minded.

"We need to be extremely cautious until we know more. There has been enormous interest in this from patients.

"Some have been led into believing the cause and a test has been discovered and that treatment is just round the corner and that is not the case.

"Over the next few weeks and months we will have more results and then we can come to a conclusion.

"If it turns out that XMRV is important, we will have to start looking at whether it is worthwhile testing for it and treating it."
 
G

George

Guest
Exactly! Levi is dead on about the Zero being major suspect. I just wish I could find the freakin paper (they obviously forgot to publish in their glee (insert disgusted snort here!))
 
R

Robin

Guest
Professor Myra McClure, one of the Imperial College London investigators, said: "We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK."

That little qualifier in the end made me laugh really hard.
 

MEKoan

Senior Member
Messages
2,630
Hi Elliot,

I'm very downhearted about it, too.

Maybe you'd like to reconsider your title as it creates, in search engines, a hit for that statement - which isn't exactly what just happened. What happened was Wessley's study failed to replicate, not that research, in general, finds no proof... I don't want to type it out again and create two hits. Plenty of people who wish to perpetrate this idea will be doing so.
 

Nina

Senior Member
Messages
222
Ok, thanks for confirming this had nothing to do with WPI!!

Weldman, sure, that's a given :) They probably had it in the drawer and were just waiting for a half decent period of to have passed before pulling it out!

I really do hope the WPI will comment on this at some point.
 
Messages
77
Location
Leicestershire, England.
Hey Koan, yeah I apologise about that, I was only copying the BBC article title but after pressing "post" I thought it could be considered inflammatory. I'm afraid I can't edit the title for some reason so if a mod could change it that'd be great.
 

dsdmom

Senior Member
Messages
397
I agree that the fact they found *zero* is very interesting. I almost read it like XMRV is the boogeyman - it doesn't exist. I don't know a whole lot about the authors of this study but I don't think we should get too worked up about it.