• Phoenix Rising needs funds to operate: please consider donating to support PR

Imperial College XMRV Study - Media Response

Countrygirl

Senior Member
Messages
4,554
Likes
22,923
Location
UK
London XMRV results

Although not part of the Science study, didn't someone from WPI do some tests on blood from the UK and got some positive results?
I asked this question yesterday, but nobody replied. :confused: To me, it seems quite important or at least worth mentioning. Dr Judy has been quoted as saying that the preliminary positive percentage results from the XMRV testing of 500 London M.E. folk 'held up'. Given the context, I took this to mean that they were comparable to the published study. As the I.C. study couldn't find any positives, this is surely of some interest, assuming that the quote was accurate. Anyone know more about this? Will she announce these results on January 22nd, I wonder? It is so hard to wait. :worried:

We in the U.K. are enormously grateful for the WPI response to the I.C. researchers. We are not used to anyone batting on our side. So much depends on this. I am really trying not to hope too much....but........if only....could:victory: be in sight?

A big :hug: to the WPI
 

joyscobby

Senior Member
Messages
156
Likes
13
Uk press associatio

This is probably where the papers picked up the story
http://www.google.com/hostednews/ukpress/article/ALeqM5inrHHwpLhcsS5o12h1PkCc57BaHw

Doubt cast on new fatigue theory
(UKPA) 1 day ago
A new theory about the cause of Chronic Fatigue Syndrome (CFS) has been thrown into doubt by British scientists.
Last October a team of US experts published research indicating that the debilitating condition, also known as myalgic encephalomyelitis (ME), can be triggered by a virus similar to HIV.
A study published in the journal Science linked cases of CFS with the recently discovered virus, called XMRV.
It suggested CFS could be treated with anti-retroviral drugs of the type given to patients with the HIV Aids virus. In light of the findings, several laboratories in the US have started offering treatment to CFS patients.
But now British researchers have conducted a new study which shows no evidence of XMRV playing a role in CFS.
The team analysed tissue samples from 186 patients with the condition using sensitive molecular testing techniques. No molecular evidence of XMRV was found in any of the samples tested.
The scientists say anti-retroviral drugs should not be given to people with CFS as they are unlikely to be effective.
Chronic Fatigue Syndrome affects an estimated three in 1,000 members of the population, producing severe physical and mental tiredness that is not alleviated by rest. Other symptoms include muscle pain, headaches, joint pain and depression.
Although the condition is now recognised as a genuine and not imagined disorder, its cause remains a mystery.
Professor Myra McClure, from Imperial College London, one of the authors of the new 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 (mouse/rat) 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."
Copyright 2010 The Press Association. All rights reserved.
Related articles
Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?
Discover Magazine (blog) - 16 hours ago
Viral link to chronic fatigue syndrome questioned
Ars Technica - 21 hours ago
Debunking Myths: Fibromyalgia & Chronic Fatigue Syndrome Are the Same Thing
About - News & Issues (blog) - 1 day ago
More coverage (22)
 

Alice Band

PWME - ME by Ramsay
Messages
175
Likes
2
Location
UK
Hi Andrew and Countrygirl,

I have been trying to find out about the "500 London samples" but have been told that this data is from an unpublished paper and no one will comment on it.

A group of patients in the UK have however, sent fresh blood samples, using an over night courier to VIP in Reno for private testing. The results have not been released by VIP dx as yet but they said end of this week. I do hope that the extra work around the Imperial College paper will not divert VIP resources away from this.

I don't know how many samples were sent but they started on December the 7th. I know of one other UK patient who independently obtained a test kit from the VIP and may have returned it before then.

Dr Lombardi may have alluded to the new private samples in this quote from Science here

((quote))

But some scientists, including Coffin and McClure, fear that Lombardi's clinic took advantage of that hunger by offering the $650 diagnostic test, 300 of which have been administered so far. Lombardi's group never claimed XMRV caused CFS, so it's not clear what a patient could do with a positive result. Lombardi argues that patients can avoid infecting other people with XMRV and have their diagnoses validated, if nothing else. His test results also bolster the science in the original paper--he says 36% of tests have detected XMRV, including a few from the United Kingdom.http://sciencenow. sciencemag. org/cgi/content/ full/2010/ 106/1
 
Messages
857
Likes
15
Location
East Coast
...

--he says 36% of tests have detected XMRV, including a few from the United Kingdom.http://sciencenow. sciencemag. org/cgi/content/ full/2010/ 106/1
OK, so if it turns out that blood samples from the UK turn out to be XMRV positive in the VIP labs what will McClure and others argue? That the samples are contaminated by mouse droppings? that they are getting false positives because of their methods, that they are lying about the results to get more $$$ - all of the above? None of the above?

Help,

Maxine
 

Summer

Senior Member
Messages
175
Likes
0
500 London Sample Results Hold Up

Although not part of the Science study, didn't someone from WPI do some tests on blood from the UK and got some positive results?
Judy Mikovits from an interview on October 10, 2009:

"We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

"The same percentages are holding up," she said.

LINK
 
K

Knackered

Guest
Judy Mikovits from an interview on October 10, 2009:

"We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

"The same percentages are holding up," she said.

LINK
Very encouraging, thanks.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Likes
2
Location
UK
I imagine that when the UK private results come back McClure et al will blame any positives to contamination at the VIP dx lab, this appears to be what they were alluding to in their paper.
 

Summer

Senior Member
Messages
175
Likes
0
Hunter Hopkins (Dr. Lapp) Support of WPI & Response

This was posted to WPI's facebook comments section, regarding their press release on the UK study, so I assume this means Dr. Lapp's support is with WPI:

Hunter-Hopkins Charlotte Nc
GO, Annette and WPI!!! we know who really has the patients' interests at heart, and you have our support 100,000%!!!!
 
G

George

Guest
Thought I'd roundup some of todays responses

This one is great fun to read!



Chronic fatigue syndrome
Seconds out

Jan 7th 2010
From The Economist print edition
A fight over the cause of a mysterious disease



LAST October a discovery was made that brought hope to millions of sufferers from chronic fatigue syndrome (CFS). A group of researchers found a bug with the long-winded name of xenotropic murine leukaemia virus-related virus (XMRV) in 67% of American patients with CFS (as opposed to 4% of healthy controls). This figure increased dramatically when the patients were retested.
The news was exciting for patients because CFS is a debilitating disorder of long-term tiredness for which there is no simple explanation, and certainly no sniff of a cure. It has even attracted a certain degree of media scepticism—being dubbed, at one time, “yuppie flu”.


XMRV is certainly a reasonable candidate to cause CFS. It has also been implicated in prostate cancer, breast cancer and lymphoma. Last year’s study, published in Science by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, and her colleagues, caused such excitement that it quickly led to commercial testing for XMRV infection. Furthermore, because XMRV is a retrovirus, like HIV, several preclinical studies have been looking at whether antiretroviral drugs might have an effect on it. One of these studies has found that of the ten licensed compounds tested, only AZT inhibited replication of XMRV.

The new year, though, has brought new complications, in the form of a study that has been unable to replicate Dr Mikovits’s work. Writing in the Public Library of Science, Otto Erlwein of Imperial College, London, and his colleagues report that they are unable to find XMRV in any of almost 200 CFS patients in Britain.

One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.

The Americans say that the British were not looking for DNA directly in white blood cells, and by using whole blood they diluted their samples too much. Kerpow! They add that the design of the British experiment did not prove that it could actually pick up XMRV in patients. Zapp! Finally, they say the British must prove they can actually detect XMRV in one of the American samples, something that they would have been delighted to provide had they been asked. Biff!

For their part, the British insist their controls are just fine and hint that the American laboratory may have had contamination problems. Blam! They also add that a number of other labs are about to publish results of similar studies looking for XMRV and say they are “very confident” about their findings. Splat!

Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet.
 
Messages
857
Likes
15
Location
East Coast
Hey George

This one is great fun to read!

......


Frustrating though this may be for sufferers from CFS, it is discussions like these, as one group of researchers tries to replicate the results of another, that lead to scientific progress. In the meantime, one of the companies licensed to do the American XMRV test claims that of the 300 patients, including some from Britain, who have sent samples in for testing, 36% have tested positive for XMRV. It seems likely that the causes of CFS will continue to be a subject of controversy for a while yet.
Hey George,

Quit posting stuff "I" don't want to read! I have a co-worker (from my former life) who reads The Economist like it was the Bible. I was hoping to have convinced him that with the XMRV studies that this illness should be taken more seriously. Now this, more controversy.

If you don't stop posting stuff I don't want to read, I will have to send my fat cat over to beat up George!!

Uh oh, moderators, was that a threat?

Maxine

Scotch on sofa.jpg
 

Countrygirl

Senior Member
Messages
4,554
Likes
22,923
Location
UK
XMRV in the London Samples

I have been trying to find out about the "500 London samples" but have been told that this data is from an unpublished paper and no one will comment on it.
Thanks, Alice Band. An unpublished paper.....when I wonder? You said you have been told...got to ask :D by whom? My hopes are rising again - they are up and down like a yoyo.

A group of patients in the UK have however, sent fresh blood samples, using an over night courier to VIP in Reno for private testing. The results have not been released by VIP dx as yet but they said end of this week. I do hope that the extra work around the Imperial College paper will not divert VIP resources away from this.
That is the day after tomorrow - (wow, I'm on the ball today :D ). I do hope people will post here.

Lombardi argues that patients can avoid infecting other people with XMRV and have their diagnoses validated, if nothing else. His test results also bolster the science in the original paper--he says 36% of tests have detected XMRV, including a few from the United Kingdom.http://sciencenow. sciencemag. org/cgi/content/ full/2010/ 106/1
Dr Judy says the percentages from the London samples were 'holding up'. :confused: I wouldn't call 90-odd% of 500 patients 'a few'. Whatever it is, it will be significantly more than that of I.C., though. It will be interesting to see how they will respond. It'll have to be those mouse droppings!

:thumbsup: Alice
 

fresh_eyes

happy to be here
Messages
900
Likes
9
Location
mountains of north carolina
Dr Judy says the percentages from the London samples were 'holding up'. :confused: I wouldn't call 90-odd% of 500 patients 'a few'. Whatever it is, it will be significantly more than that of I.C., though.
HI CG. I was thinking that the 300 tests cited by Lombardi refers only to VIP Dx commercial tests, of which "a few" have been from the UK and 36% have been positive, whereas Mikovits' 500 are WPI study tests, in which "the same percentages are holding up".

If this is the case, then Lombardi's numbers wouldn't include antibody tests, only PCR & culture.
 
G

George

Guest
Bring it on (drooly grins)

Hey George,

Quit posting stuff "I" don't want to read! I have a co-worker (from my former life) who reads The Economist like it was the Bible. I was hoping to have convinced him that with the XMRV studies that this illness should be taken more seriously. Now this, more controversy.

If you don't stop posting stuff I don't want to read, I will have to send my fat cat over to beat up George!!

Uh oh, moderators, was that a threat?

Maxine
Yeah I'm surprised by the number of "business papers" that picked this up. I don't know if it's the service they use or what but I think it's cool.:sofa:

Countrygirl: looking forward to reading those stats! Hey Fresh_eyes hows it going?
 

Countrygirl

Senior Member
Messages
4,554
Likes
22,923
Location
UK
You beat me to it, fresh eyes

HI CG. I was thinking that the 300 tests cited by Lombardi refers only to VIP Dx commercial tests, of which "a few" have been from the UK and 36% have been positive, whereas Mikovits' 500 are WPI study tests, in which "the same percentages are holding up".

If this is the case, then Lombardi's numbers wouldn't include antibody tests, only PCR & culture.
I just realised the above, as soon as I posted. :ashamed: Not as on the ball today as I thought.

Thanks anyway, fresh eyes. I am feeling a little more hopeful......for the moment.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Likes
2
Location
UK
It was someone from WPI who answered the query about the London samples. However, I cannot say who it was (no permission sorry!).

The results from the private UK samples go to the lab who took the blood samples first of all and then they are sent to the physicians patients nominated on their forms. It will take a while to filter out to individual patients.

The Lab however, may be able to comment with some general figures or VIP may be able to comment. I hope so but the patients may need to sign a confidentiality disclaimer or something. For exmaple if they are all negative or all positive and someone releases a press release it would be like getting your results in public.

As many of these London samples are from London, Imperial College could re-test these patients (more than one are seen at a CFS clinic under Imperial College). There is a lot that we can do with local papers, media and health services once we have the results.
 

Summer

Senior Member
Messages
175
Likes
0
Andrea in Facebook 01.07.10

I started a thread on this advocacy request by Andrea, but I felt it should be posted here:

From Facebook Entry January 7, 2010

This press release has been sent to every article that has been published. Yes we need all of you to write and ask them to tell the whole story. It's time to put on our boxing gloves! United :) @Carla, Carlos, Hunter Hopkins , At everybody that can it's time to Unite under one Cause. Please email me and let's get to work.
angewhittemore@gmail.com
It's literally Psychiatry against Science
Who's for Science????

Andrea
ETA: Andrea has now added further details down further in the thread:
Writing the papers with your personal story . especially Science, Discover, Nature, Economist, the UK papers , And any papers that published this . The thing is Plos One should not be getting this much coverage. It's CFS that's why. It sells papers . Let's take advantage of right now at this moment they are focused on this disease and educate them about ME/CFS from a personal point of view.
Andrea says in the thread that they are working on new information. This is her latestFacebook post today:

Psychiatrists VS. Scientists
WPI has written a press release published in notes. We have sent this out far and wide to the people covering the UK study. We are at this moment working on new information and I will publish when authorized to do so. In the mean time if you would like to write the people who have covered t...his story this always helps the media to get both points of view . A reporter once told me personal stories are the best way to get to the media. After all they are like you and me. Most really want to show the human side of things. Google XMRV and UK and you will see the articles written. Please feel free to leave your comments , questions and concerns. The gloves are off get ready to Unite and Fight, Fight, Fight!!!
Andrea W.G.
Emphasis mine

LINK
 
G

gerwyn morris

Guest
imperial college study

patients with depression were not excluded-depression is not a major psychiatric condition-depressed patients can easily fit the cdc criteria if post exhertional malaise is not considered-the diagnostic methods used in the study does not even consider this symptom l.these patients are entirely different from those involved in the study reported in science-as there is no control group or detailed diagnostic information the british patients may have all been suffering from depression