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The Fight is on...Imperial College XMRV Study

dipic

Senior Member
Messages
215
I see from one of Holmsey's posts that Prof. Wessely appears to read some of the threads on here. Well, I'd just like to say that it's a FACT that my life has been made a thousand times worse than it needed to have been over the last 20 plus years directly as a result of HIS and his like-minded colleagues actions and work. It is because of you Wessely that a climate of suspicion and mistrust of ME patients exists in the UK. It is because of YOU that the medical profession treats us largely with contempt. It is because of YOU that we have to fight so hard to obtain benefits under the constant implied accusation that we are workshy malingerers. It is beacuse of YOU that so many ME patients have been made to feel in so much despair that they have taken their own lives. It is because of YOU that crass media outlets such as the Daily Mail can run ignorant polls asking ignorant members of the public that have taken their cues from your skewed output to vote on whether ME is a real illness.

So Prof. Wessely, how can having created such a hellish climate for those of us living in the UK, be defended by yourself? Do you feel good about having made people such as myself feel real despair? How are any of your, and your close colleagues, actions any positive help whatsoever?

And for you Holmsey, I don't think that anyone who has ME has any doubt at all that their illness is a physical one. Personally speaking I've considered whether there could be any psychological component in my ME and I can honestly, hand on heart, say that there isn't. I wish there was, because then I'd stand a chance of getting better. Sure anyone with ANY illness can develop psychological problems that may require help, but that's not what Wessely et al say, they say that ME is CAUSED and PERPETUATED by psychological factors. No it isn't, and anyone with ME would know that.
Very well said. Unfortunately I fear it will fall on deaf ears (Holmsey, SW, et al).

I don't know how anyone can be so blind as to the overwhelming amount of harm the SW school has caused.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Erik Johnstone said

I find it hard to believe that they would be so diaboloical as to weed out every last CFS patient that really meets whatever criteria set one has in mind. Indeed its hard to believe they would even be able to do that, in the unlikely event that they had the overt intention of doing deceptive research in that way.

If there were only 30 patients, I'd say then that maybe there were no CFSers in the sample. Or, had they found 40% of the subjects to be possible, I certainly wouldnt rush to deny the possibility that the other 60% were poorly selected.

But no real CFSers at all, out of a sample of 170, without employing severe dishonesty? Not possible. There have got to be at least 40 "real" ones in there. The only way to get a little bit less than 40 would be to use Reeves' definition, but they didnt do that.

It says that the 186 were selected from consecutive attenders at a NHS clinic, but if you read the references it is clear that these were bloods stored from previous research papers. The statement is disingenuous as the impression is that it was consecutive attenders that were used but they were SELECTED from this group, which is not the random choice it seems. In fact the consecutive bit should have been left out as it is meaningless when you don't use them all.

Going to those previous papers, the patients were screened and excluded if they had any organic disease or positive results from the minimal blood tests. SW's definition of CFS excludes anyone with neurological signs so they would be out too.Then they were then given a questionnaire and only if they gave the right answers to that were they deemed to have CFS.

If you add to all this the fact that many people with CFS are too ill to attend clinics, especially in London where difficult travel is involved and the fact that GPs have been encouraged to refer anyone who is fatigued at all, the numbers likely to fit the Canadian guidelines fall drastically.

The waiting time for attending these clinics is very long and in the meantime some patients, possibly the sickest, will research the net. Many of them refuse to attend the clinics especially SW's, after what they find out what they are like.

I think it is perfectly possible that not one of the group of 186 had the illness ME or incline village CFS.

I have some doubts about the study for scientific reasons, too but the cohort problem is the biggest.

I can understand why US people find it hard to believe the UK situation but remember that Reeves honed his definition to match SW's not the other way round.

This is dirty politics, not science. The evidence of how underhand they are is available. They get away with it because no one can believe it could be happening. We know all too well it is true; we have suffered for years because of it, like a beaten wife married to a bishop.

Mithriel
 

Min

Messages
1,387
Location
UK
well said Mithriel!

There's a good article here:

http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=15211401

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.
 

Alice Band

PWME - ME by Ramsay
Messages
175
Location
UK
Mithriel and all,

As an ex-London ME Support group leader I can confirm that the patients who went to Kings College regularly were often a particular type. Some fought the system and went there to make a point. Others went there once and never again as they were scared to go against their GP's advice to be seen there.

For someone to be a "consecutive attender" then they would be likely to be a paid up member of what they had to offer or someone who had no other choice and felt that this was better than nothing.

There are CFS patients in London who do believe that they are suffering from stress, that their problems are emotional and who support CBT, GET and the psychological approach. Some CFS patients feel supported by this approach and as it is all on offer they use it. How genuine their dx is I simply do not know. Diagnosis of CFS here in London is very bad.

What I don't accept is that there wasn't one single genuine PWCFS or ME in those samples. There are people who have gone there and tried their best to get better with the offering there. SW would need to be very good at weeding them out and maybe he is. It seems more likely to me that the methods were flawed, a big mistake was made or there genuinely was no XMRV to be found.

In his cortisol paper the SW patients responded differently than PWCFS. It may be that he does weed out the genuine CFS and ME patients or that people with "real" ME and CFS have stopped going there now. There may be something "different" about his patients but we don't know for sure and it is all guesses.

We do have an example of corruption in UK CFS research. Patients who were seen at the Liverpool CFS clinic saw a consultant who blatantly boasted of being able to pick the "right" patients to confirm his own belief that GET was curative in CFS (and published a paper).
 

Eric Johnson from I&I

Senior Member
Messages
337
"Consecutive attender" probably means they took in everyone in a consecutive series of new patients (for their initial screening). This is often done and pointed out to underline that you didnt pick and choose in a biased way.
 

Eric Johnson from I&I

Senior Member
Messages
337
Fresh, the german prostate study used serology (looked for antibodies) in addition to PCR. They found none.

But is there evidence that XMRV-infected prostate cancer patients should be seropositive? I'm looking and not finding. It shouldnt be hard to find since there are only 20 papers on XMRV.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Fresh, the german prostate study used serology (looked for antibodies) in addition to PCR. They found none.

But is there evidence that XMRV-infected prostate cancer patients should be seropositive? I'm looking and not finding. It shouldnt be hard to find since there are only 20 papers on XMRV.

Thanks, Eric. So looking at the US prostate cancer study ( http://www.pnas.org/content/106/38/16351.long ) it looks like they only looked at pieces of tumor, not blood, right?
 
Messages
28
Location
UK
I second that :thumbsup:

Thanks for the comments. I have posted it as a new separate thread. I don't know where was the best place for it but I have placed it in this section as he seems to be following the comments on his little study. I just keep picturing him with an evil sly grin on his face enjoying all the latest upset that he has deliberately caused us. I've invited him to sign up and come on here and give some answers. ooh look there goes a flying pig.

Best wishes to all
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
What I don't accept is that there wasn't one single genuine PWCFS or ME in those samples.

Let's just suppose for a moment that XMRV is not the cause of either CFS/ME or of a certain type of aggressive prostate cancer. Let's just imagine for a moment that it is a harmless little retrovirus that hangs around doing no harm. Even in that case, they should have picked it up in 4% of those tested if their methods were accurate. The fact that they could not find it in anybody sounds a HUGE alarm bell for me. Their methods were faulty. Period.
 

Eric Johnson from I&I

Senior Member
Messages
337
Yes, I calculated a p value for that. Aggregating three studies that have info on XMRV in normals, the odds of Wessely et al getting no one XMRV+ by chance -- considering the subjects as normals -- is under 2%.

I also learned, later, what the rate of positivity was in the unpublished Japanese study (using serology). Throwing this in would move the p value under 1% probably.

So I think it very unlikely that the study is valid, unless the thing just isnt found in Europe. But Mikovits reported finding plenty of it when she tested hundreds of London subjects.
 

parvofighter

Senior Member
Messages
440
Location
Canada
My response to The Economist's article

Hello gang, Another ACTION opportunity! Add your comments to the new Economist article! :D:Retro smile::Retro wink:

Article: http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=15211401
Comments: http://www.economist.com/node/15211401/comments
Register so you can add a comment: You must be logged in to post a comment. Please log in or sign up for a free account.
Add your comment: http://www.economist.com/node/15211401/comments

Heres mine a version of one Ive written for a few papers.

TRY HARDER! :Retro mad::Retro mad::Retro mad::Retro mad::Retro mad:

The Economist has sunk to an uncharacteristic low. At the VERY least, in reporting about a replication study of highly charged research on XMRV and Chronic Fatigue Syndrome (ME/CFS), the Economist should have done the necessary homework to ensure that the Imperial College research DID indeed attempt to genuinely replicate the Science XMRV methodology.

The Science XMRV research DID pass rigorous peer review - over several months. The Science results were produced at the WPI labs, and repeated not only at the esteemed Cleveland Clinic labs, but also at the National Cancer Institute. Conversely the rebuttal research by Imperial College was self-funded, and peer-reviewed over a maximum of 4 days by a journal that allows researchers to Pay-for-publish. A far cry from an independent replication study, much less a scientifically rigorous one.

There are many methodological weaknesses that render the Imperial College research a NON-REPLICATION. The most glaring is that patient cohort definition did NOT follow the rigorous Canadian Criteria for ME/CFS AND Fukuda Criteria, as per the Science paper. This is a longstanding flaw in much of the research - particularly that conducted by this weeks authors. It is no surprise they didn't find XMRV in a cohort of vaguely fatigued patients of undefined diagnosis. Please educate Economist reporters on this topic affecting 10x more patients than AIDS. See for yourself whether we are talking apples and oranges. The Imperial College paper also only mentions excluding patients with "the Fukuda-specified exclusionary psychiatric disorders". They do NOT state that they used Fukuda, much less Canadian criteria.

Any knowledgeable, ME/CFS researcher knows that a hallmark of Canadian Criteria-defined ME/CFS is Post-Exertional Malaise. Not just debilitating mental and physical fatigue, but also flu-like symptoms: hit-by-a-truck achiness, sore-throat, swollen uvula etc., after trivial activity. Viral symptoms, in other words. Another world from the tired cohort profiled in Wesseley's research.

Surely the Economist has better scientific savviness. It would also behoove you to learn about the well known possible variability of PCR primers, so that you can make an intelligent assessment of the quality of the lab science. Finally, that, "All patients had undergone medical screening to exclude detectable organic illness". In other words, the Imperial College scientists have arbitrarily determined that patients with ME/CFS do not have organic illness - a self-fulfilling prophesy.

Also check the PLoS website where this weeks research was published: http://www.plosone.org . On average, all accepted articles have been reviewed by 2.8* experts (one Academic Editor and 1.8* external Peer Reviewers). The study was received December 1 2009, & accepted December 4 2009. A maximum of 4 days for "peer-review". A FAR cry from Science journal's rigorous peer review of several months!

DO bring on more research on ME/CFS and XMRV! But please differentiate between credible research and flimsy science. And DO use a tone that reflects the gravity of a disease implicated in prostate cancer, breast cancer and lymphoma. Imagine using "BAMS" AND "KERPOWS" in an article on AIDS.

THE ECONOMIST STANDS TO BE RIDICULED FOR PROPAGATING SCIENTIFICALLY FLIMSY RESEARCH ON A DEVASTATING NEUROIMMUNE DISEASE THAT AFFECTS MILLIONS.

Please do your homework, and write on forthcoming XMRV research that is high-calibre and indeed "peer-reviewed". Remember, 75 American retrovirologists were so interested in the Science work on XMRV that they convened an emergency meeting - as did the US Blood Service - to develop assays and diagnostics, and urgently determine the safety of the blood supply from this cancer-causing retrovirus. Now THAT will be something worth reporting! We all want good science vs marketing ploys. Please learn to differentiate between the two.

NOW A REALLY GOOD STORY - Wait for the Blood Review in the US to come out - with its findings on ME/CFS and the XMRV retrovirus. THEN investigate how a segment of the psychiatry lobby in the UK and US has put a stranglehold on biological research for patients suffering from this neuro-immune disease. And dying - from a cancer-causing retrovirus. How seriously ill patients who "look OK" have been laughed out of doctor's offices for decades - as they lose their health, jobs, homes, families, and friends. Now THAT's both science - and a hell of a story. After all, if some 4% of Americans may carry this virus, this could happen to YOU!

To learn about ME/CFS, see the rigorous Canadian Criteria at http://www.cfids-cab.org/MESA/ccpc.html A far cry from the vaguely fatigued everyday-Joes who populated Wesseley's "Failure to Detect" study. Everybody gets tired. ME/CFS is a completely different ballgame quite possibly tragically in the retroviral league of HIV. Shame on you for propagating scientific hogwash!
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Hi parvo - you're really on a roll! I agree with everything you've said there - except for the criticism of The Economist. I thought their article was a good one, for what it was: light, general-interest reading. Far, far better than the "CFS Virus Myth Debunked" type stuff we've been seeing. I'm more than happy to see this played up as a big scientific controversy, as I think that will drive the research forward. *Not that you have to agree with me on this! Just my $.02.*
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Ok, some deductive reasoning.

Is it reasonable that what WPI found is the mouse virus contaminating their samples?
A. The virus they found is not the exact mouse virus. And three labs found it in the CFS samples: WPI, NCI and CC. If the samples were contaminated, they would have had to be contaminated at the location where blood was drawn, which is clinics all over the US. That is unreasonable. Even Coffin said it is different.

So, this virus does exist and contamination is not a reasonable conclusion. They were seeing something and it wasn't the exact same virus in mice.

If the virus exists, then could it be the WPI made a mistake and saw it in the CFS samples, even though it wasn't really there?
A. WPI was not the only lab that saw it in the CFS samples. NCI and CC saw it also. The healthy control positive percentage was consistent with the previous prostate cancer healthy control percentages. So far, they are reporting that those who are paying for the test, that is no criteria required (except they have enough money to get tested), the percentage of positive results are higher than healthy controls, as reported by prostate cancer study and previous WPI study.

Since contamination is not a reasonable conclusion, based on the evidence, and it is not reasonable that three different labs made the same mistakes in looking for the virus, and clearly a virus exists, then, could it be WPI made it all up?
A. If they made it up, wouldn't their initial finding have reported a higher percentage than 67%? They would have reported closer to 80%. If they made it up, then that would mean a science fraud that includes NCI and CC. And they would have fudged the healthy control percentage just to make it look like they aren't copying.

So, I can not help, using deductive reasoning, but to conclude that WPI's study results show some relationship between CFS and XMRV.

The WPI study was particularly designed to test those whose clinical manifestations point to a possible viral connection, including clinical manifestations and that it is outbreak areas.

While the UK study said they chose individuals who said they think a viral infection precipitated the onset of their symptoms, that would seem to point to a similar group. Yet the devil is in the details: the folks chosen are those willing to go to a clinic that focuses attention on psychological treatments, thus excluding many who have been there, done that and gone on to other treatment options, and they are people who don't meet the same biological criteria as the WPI study, quite the opposite, those with the same biological abnormalities, such as abnormal cortisol levels, were excluded.

I think all that needs to be said about the UK has been said. Unless corruption is revealed in some of the studies, I am moving on to waiting for the next study. Please, if another one comes out, post it in another thread. I have closed the door on this study. I won't be back to this thread. It was cooked, I ate it, digested it, and now I have flushed it down.

But I have enjoyed it.

Tina
 

anne_likes_red

Senior Member
Messages
1,103
What I don't accept is that there wasn't one single genuine PWCFS or ME in those samples. There are people who have gone there and tried their best to get better with the offering there. SW would need to be very good at weeding them out and maybe he is. It seems more likely to me that the methods were flawed, a big mistake was made or there genuinely was no XMRV to be found.

I agree. Or they weren't looking for the same thing, or looking for it in the same way that the WPI did. I wonder if Judy Mikovits will be able to clarify more in a couple of weeks?
We need more studies, and hopefully some with proper selection criteria.
 

Orla

Senior Member
Messages
708
Location
Ireland
Hi Martlett and all:

Let's just suppose for a moment that XMRV is not the cause of either CFS/ME or of a certain type of aggressive prostate cancer. Let's just imagine for a moment that it is a harmless little retrovirus that hangs around doing no harm. Even in that case, they should have picked it up in 4% of those tested if their methods were accurate. The fact that they could not find it in anybody sounds a HUGE alarm bell for me. Their methods were faulty. Period.

I was also thinking along these lines.

As for the cohorts issue, I would be surprised if no one in the study had ME/CFS. Sometimes patients attend these places out of pure desperation.

Orla
 

Countrygirl

Senior Member
Messages
5,511
Location
UK
A stunner from Parvofighter

:balloons: PARVOFIGHTER :balloons:



That is a stunning response. Thank you. :Sign Good Job:
 
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