XMRV and chronic fatigue syndrome: PI FAIL

your a pig. go to school and learn to write you asshole. plus I believe this doctor judy mikovits has a higher education than you, UVA is a very difficult school and from they way you write I can't tell if you passed the middle school SOL bullshit. You can't even spell blog. fucking idiot. It's also funny that you want to fight a lady. You are a classless piece of shit, mine as well have pulled your scummy ass out of the horse shit piles at the rodeo. I'm generally angry at you, Mr. tough guy, hiding behind his computer writing blogs with cuss words. HAHA Grow up, grow a pair and do something better with your life then call people cunt's, and talk about beating women's asses. One last suggestion buddy, instead of sitting behind a computer talking shit, if your so correct than actually do something about it. Oh wait, you cannot, you didn't pass the middle school end of year instruction tests, your parents taught you the f word rather than teaching you anything important. HAHA your a joke I think it be best for your reputation to take this shit down. Plus I bet your a little pussy, I bet women beat your ass that's why you get on here and have to act big. HAHAHA Peace scum bag.

Your a pig, I have concluded that your not intelligent and have been taught worthless shit, such as cuss words. You think your a big tough guy because you use the words "fuck" and "cunt". Dr. Judy Mikovits is very intelligent and the only thing I can tell from this post is that you are not. You cannot spell blog (check the first line) and it seems as all you want to do is beat women's asses. I'm starting to think that your a bit of a pussy, I bet you get your ass beat by chicks. You are one of those people in the world that should probably find a new living as well as delete this piece of non sense you have up here called a science blog. Not really a science blog, it's a personal attack on someone you do not know, plus have mis represented, therefore how can you call her a cunt. Plus, cunt is a trashy word used by the lowliest of the low, good one buddy. If your so smart, get off your computer, quit hiding behind a screen and come face the real world, do something worthy in your life and get off of other people's backs. All and all, you are the scummiest writer I have ever come across. Grow a pair, and then strut your stuff, until then shut up.

In spite of your tone (not that I really give a fuck, and of course it's your blog), and considering your last response to me, I have to say that I cannot argue with the merit of what you are putting forth here. I don't disagree. I've been watching this aspect with much dismay, and not because I want to see a linkage established if it's not fully supported by the science.

Just one thing.

The WPI study--I have to repeat this, since it doesn't seem to make any difference to you--involved a cohort whose diagnoses fell under both Fukuda and Canadian Criteria. McClure's did not.

It's a huge difference, and that doesn't mean that had McClure picked a cohort that qualified for Canadian Criteria CFS/ME that they would have found XMRV. Nobody can say that.

But I keep making this point for a reason. It's a huge difference. It's something you should consider.

Dear Judy,

Ohhhhh bitch! You got jacked bitch!

Ok, if your positive control is a plasmid, how on earth am I to believe your technique is sensitive enough to pick it up in ANY blood? If that's true, between that and the cohort differences, I don't think it's valid to say this was a legitimate attempt to reproduce the results (a legitimate study to see if the results were more broadly applicable and robust, perhaps).

Although I'm inclined to agree they should have used Real Time, I think there are plenty of cases where you can get higher sensitivity with standard PCR (though I'm not sure if that's methodological or just a consequence of particular primers).

"Could you imagine giving someone chemotherapy and radiation therapy cause maybe they have cancer. Maybe not. Whatevs. That is exactly what Mikovits is suggesting!"
Uhm, you LIE! :-P
Chill out for a minute ERV. If they are saying XMRV should 'at least' be useful as a biomarker, how in the hell do you translate that as "they want to give people antiretrovirals willy nilly!"?

On the broader philosophical point, if you think it's "misrepresenting science" to tell people "our aim is to develop drugs for disease X", you really have no clue how to write an NIH grant, let alone a press report, do you? This woman used to be a VP of drug discovery, I'd say she has more street cred as a drug developer than 90% of NIH-funded scientist who talk about wanting to treat diseases when they talk to the press. She might be wrong, and she might get no where, but 'translational research' is damn hard to pull off; I do believe she's trying.

I don't have a horse in this scientific race, but it's obvious you've got some sort of agenda and have flipped out and are not actually reading the facts of the story you linked to.

@Three Chord Monty:

This comment was recently posted on the PLoS ONE site by three of the co-authors of the UK study. In it they explain why they don't use the Canadian criteria:

The criteria that we use are the Fukuda et al 1994 criteria that are far and away the most widely used across the world and in the research literature. We do not use the so-called âCanadian criteriaâ, which are designed for clinical use, not operationalised and do not translate easily for use in research. Even so, had we attempted to do so, a substantial proportion would have also met these clinical criteria.

If that's correct, it suggests that the discrepancy between using/not using the Canadian criteria does not explain the different results.

@becca:

I don't follow your comment about "pick[ing] it up in ANY blood." The UK groups claims they can pick up the positive control spiked into patient DNA at a level of 10 copies (see here). How does this compare to the WPI study? (Note - I'm familiar with PCR, and used to run a Real-Time PCR group back in the day, so I can think of lots of things you MIGHT mean. I'm just curious what you DO mean.)

qetzal-- I do PCR with HIV-1 plasmid in H2O, 8E5s, and 8E5s diluted in non-HIV-1 cells. My sensitivity doesnt change (1-10 copies), just the CTs are pulled to the left with plasmids. However, HIV-1 primer/probe sets are pretty well defined at this point.

I would be more worried about false-positives with patient samples (non-specific binding), than false negatives.

Which brings me to another point about the Reno study. They keep saying that 4% of their healthy controls are XMRV positive.

No, they are PCR positive.

0% of their healthy controls had anti-XMRV antibodies. That means 100% of their XMRV(+) healthy controls hadnt seroconverted (not likely), or their PCR reagents have at least a 4% false-positive rate.

None of the healthy controls met HIV-1s standard of 'positive'.

Which still makes me wonder where all the asymptomatic carriers are.

:-O

This isn't as surprising as you think. CFS research is a quack magnet with a lot of anger and hatred and very little credible evidence for anything.

On one side you have people looking for a biological cause, doing lots of tests, examining different theories, but not coming up with much (and when they do it's rarely replicated).

On the other side you've got those who think that CFS should be treated as a psychological condition (they seem more ambiguous about whether it actually is a psychological condition), and that biological testing and investigations are dangerous because they encourage patients to 'medicalise' their symptoms.

Both sides hate each other and think the others are screwing over CFS patients.

When the London group complained about the WPI not being cautious enough about the presentation of their results, despite them having being peer reviewed over a six month period and having tests checked in two different labs, this should be seen as them saying "releasing these results is dangerous as it will encourage disturbed thought patterns amongst CFS patients." Seeing as the London group had just released their paper after two days of peer review, you can understand some chaffing at this at seeing it as part of the ongoing attacks which take place between the two sides..

The WPI has been reacting poorly to the London study, and this is making them look silly, but it should be seen in the context of the long history of quackery, hatred and propaganda which has long enveloped CFS.

It's also worth remembering that the founders of the WPI have a daughter with CFS, and are probably unusually emotionally involved in this scientific work. If she's seriously ill, and they have test results saying she has a retrovirus, they're likely to be especially keen to attack those who would claim she is only ill because she mistakenly thinks she is.

I think it was especially unfair to attack the honesty of the virologist conducting the London study, but I expect that the involvement of Simon Wessely led to them all being tarred by association. This was wrong, unprofessional and looks bad. Maybe it was done carelessly as the interview was with a local paper, and hopefully not meant to be part of an official statement. Not that this excuses them. The unquoted reference to the insurance industry does sound conspiratorial, but then a British Parliamentary inquiry into CFS was also critical of the dominance of a small number of researchers with links to the insurance industry. I donât think itâs likely that intentional corruption has affected CFS research, but itâs not quite the same as creationism. Both sides of the debate have such little respect for each other that they have a tendency to assume the worst â that the WPI are just trying to sell expensive and useless tests, or that Wessely is trying to marginalise the sick and disable to prevent them from becoming more of a burden on society.

I also remember seeing Mikovits say that CFS patients should not be started on anti-retrovirals (at least outside of a research setting). I donât think the quote of hers you used shows that she has changed her mind.

Awesome! Vintage ERV, this.

"They skewed their experimental design in order to not find XMRV in the blood...
... (Mikovits) suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study..."

***

Major, major accusations there.

Did WPI's PR department have the day off when those choice clangers slipped through?

If she's so certain of their findings, then 1: Good on her, and 2: why couldn't have she maintained a dignified, professional silence?

Less mud slingin' and more professionalism please!

I don't think this came through the PR department. I just read a CFS campaigner criticising these comments, and explaining that Mikovits can really talk a lot, perhaps without taking the time to think about whether she should say what she's thinking. (Basically she sounds like a passionate science nerd who shouldn't be let near a reporter).

I just read this puff piece about her (http://www.unr.edu/silverandblue/archive/2010/winter/Pages%20from%20NSB…) and she does sound committed to her patients. I think she's really personally involved with them, and has absorbed the hatred a lot of them feel for people like Wessely.

I really don't know if this XMRV research is going to hold up, and Mikovits shouldn't have said what she did about the London study either way; but I don't think it's fair to talk of her with the sort of disdain ERV's post does either. Science hasn't gotten into gear with CFS yet, and it's not surprising that the mode of discourse is not exactly scientific either.

Erv, good points, but now you're doing it too. Over-interpreting the evidence:

"We are still trying to develop drugs to treat Chronic Fatigue Syndrome. That was our goal, and nothing has changed."

No where here does she say they are: 1. developing drugs to treat XMRV; 2. developing anti-retrovirals to treat CFS.

Mudslinging or not, stay tuned.

ERV #5

I agree with all your points. Especially the one about the 4% positives in the healthy controls. That sounds a LOT like infrequent cross-contamination. It's (relatively) easy to test for rampant cross-contamination. A few negative controls will do that for you. It's MUCH harder to ensure that you're not getting contamination at the level of a few percent of samples or reactions. We used to have to deal with that in TaqMan assays quite routinely, to a level that would satisfy FDA.

What I didn't understand was this statement by becca:

Ok, if your positive control is a plasmid, how on earth am I to believe your technique is sensitive enough to pick it up in ANY blood?

I can guess what she might mean, but preferred for her to explain.

I've been watching this issue from the sidelines, thinking that this would be a good case study of controversy in science. Unfortunately, with all the mudslinging from CFS patients, advocacy groups and the WPI researchers, it's becoming a case study of how NOT to have a proper scientific discourse.

A lot of the criticisms aimed towards the British cohort study seem unfair, if not weak:
(i) the issue about the Canadian criteria - unless these criteria are very narrow, I find it hard to believe that NONE of the patients in the British cohort qualified for this study
(ii) the issue about it not being a "true" replication study - the true scotsman fallacy comes to mind. To the contrary, if the British cohort study had found a link, I would say the evidence would be stronger for it. If XMRV is in fact found more frequently in CFS patients regardless of where they're from, then it should not matter what methods were used as long as they are capable of detecting XMRV with an acceptable false-positive / false-negative rate. As yet, I am unaware of any evidence that the WPI's methods are superior.
(iii) the issue about conflicts of interest / ulterior motives - while this could be a relevant issue, I find it is often merely an ad hominem argument. Furthermore, potential conflicts of interest could exist with both groups.

So you think you can make a strawman argument and then just retreat into your ivory tower.

Yes, science is not about scientists think. Yet what scientists and medical practitioners think have a direct effect on the success of treatments or development of such.

You are right that ego should have no place in science, yet ego is interfering with the science of the UK study.

By advocating an etiology and treatment protocol that only helps a small minority of patients, vocal practitioners such as Wessely has a large net effect on the health of the patient body as well as an effect on the economy due to lost productivity. If people like him were to admit that perhaps for some it is purely somatic, others purely biological, that further tests could be developed to tell the difference, thus increasing his own treatment effectiveness (by treating only the relevant patients).

There a lots of ways that a null result can occur. The fact remains that the UK study was a lot less rigorous than the USA study. Secondly, due to the researchers bias, they were quite content with the null result.

I am personally skeptical that XMRV could account for the etiology of anything more than a smaller subset of patients. But the fact is that the net result is still inconclusive. It is not reasonable to make up your mind yet since all the evidence is not yet in.

I wonder if I can now tell when you're really angry by the absence of wanker speech in your posts.

I'm a bit curmudgeonly in that respect (I witnessed the birth of that mode of typing first-hand as a BBS sysop in the mid-90's, so abhor it particularly), but I think I can objectively say that you write better without it.

I fully support Judy Mikovits words to the press, and the CFS patients community feels totally well represented by WPI and Judy Mikovits in particular.

You might not realize that every single word that has been said is true, and if not conspiracy, there is a clear interest in the UK research team to perpetuate this illness as a psychiatric entity, no wonder why 3 out of the 7 Research team are psychiatric "professionals" , as an example Mr Wisseley, that has ben away from CFS research since 2001, and is involved in this study to do patients selection in the sample, which can screw the whole process.

You should be aware that Judy Mikovits has not started this war, UK research team assured in the press that XMRV was not present in the UK, that it has not crossed the atlantic basically, they found zero XMRV strains in the sample studied. Well the news is that a private paralel study was conducted with UK CFS patients that sent blood samples to VIP Dx, and so far one has obtained the results, and "surprise", it was positive to XMRV, which already points to the conclusion that the UK released study was not using the right techniques to detect XMRV instead of their conclusion that XMRV was not a UK problem.

You might be angry at Judy Mikovits, but We are angry at you for this article, if you are a scientist you can speak back in the same way they speak to you, and that should be not a problem my friend.

I'm waiting for many other studies to come in. At the moment we know nothing.

However, I must point out, this article will gain no ones respect, accept that of a ten year old.

However, I must point out, this article will gain no ones respect, accept that of a ten year old.

Talk about irony...

See this is what happens when you find a frickin BARTENDER AT A YACHT CLUB and pay her $150,000 to be the director of your scientifickal researchings institution. Your problem now, Nevada!

Ya know what else pisses me off? All of us scientists spending half our time applying for grants while these losers get millions DIRECTLY FROM the STIMULUS PACKAGE. See you just give $50,000 to your congress rep and your senator and they put millions for your lab in a bill no one reads. Oh it helps when you are THE EMPLOYER OF YOUR SENATOR'S SON! Sheesh.

Well the news is that a private paralel study was conducted with UK CFS patients that sent blood samples to VIP Dx, and so far one has obtained the results, and "surprise", it was positive to XMRV, which already points to the conclusion that the UK released study was not using the right techniques to detect XMRV instead of their conclusion that XMRV was not a UK problem.

Citation, please. You're not elevating the tone of discourse at all by asserting without evidence or argument that Mikovits is 100% in the right and the UK group is part of a shadowy medical conspiracy. Provide evidence for one or the other, or sit patiently and wait for more studies like the rest of us.

Also, you presumably support Mikovits. Why, then, do you support what she has said to the press when what she said clearly makes her look like a raving nincompoop? I would think that if you believe she's correct, you'd advocate for her being a little more diplomatic about it so that she'll be able to retain her credibility and continue doing her work. Not to mention how fishy it looks: this woman doesn't seem to have a trace of a doubt that the results of her study are correct, even though the results of other studies apparently contradict them. Not a particularly scientific attitude.

CFS research is a "Quack magnet"?
Yeah, if so, Wesseley's the biggest one!

Andrew-- We dont have towers in Oklahoma. We build out, not up.

Thanny-- Sorry if youve been misled, but as Sili said, this is classic ERV :D

Carlos-- The XMRV 'test' is PCR based, and as I just said, they have a very high false positive rate. 4% of their healthy patients came back XMRV PCR positive, when they are almost certainly not infected. 4%. False positive rates for HIV-1 tests are ~0.0004%. So, Im not remotely surprised that someone got a 'positive' test result, CFS or not.

AllAboutME-- heh.

Dan-- You must be new to Kook Kountry. Kooks are allowed to do whatever the hell they want, no matter how disgusting the behavior, because its all is done in the name of The Cause.

For example, Creationists routinely call all scientists Nazis. Naturally this is offensive to both scientists and Jewish people. So someone stands up and says "Hey. Scientists arent Nazis just because they support evolution. Youre kinda a dick for even suggesting that", the Kooks scream "CIVILITY! OH CIVILITY! THERE COULD BE CHILDREN READING THIS!! HOW COULD YOU SAY 'DICK'???" and they clutch their pearls and fall to the ground.

Thus Mikovits casually accusing a group of scientists of scientific fraud is fine and dandy.

But me calling out her GRADE A BITCH behavior... "CIVILITY! OH CIVILITY! THERE COULD BE CHILDREN READING THIS!! HOW COULD YOU SAY 'BITCH'???"

Instead of dealing with valid criticism, you feign offense. Precisely what I wrote about in the OP. *shrug*

Mikovits isn't worried, at this point, about the adverse judgment of the science community or CFS patients.

I think she is worried about being perceived to have disappointed an entirely different demographic and that second set of footsteps in the parking garage.

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study."

Seems like a pre-packaged excuse, given how little clout insurance companies in the UK have. The overwhelming majority of people have the NHS as their sole health care provider.

Again, Mikovits isn't talking to us or even to London.

She works for the "Shifty Casino Lobbyist Kingpin's Kid Who Has a Syndrome Research Institute".

The tone of those statements just doesn't make sense unless Judy is picturing the vastness of the Nevada desert and colorfully nick-named fat guys wearing see-through socks.

"Seems like a pre-packaged excuse, given how little clout insurance companies in the UK have."

It is also completely absurd. How do you file a claim for compensation for CFS by intimating viral causation?

It would require a tidy portion of the UK population to contract CFS from toiling away in dreaded but heavily insured Welsh XMRV mines.

As it stands now there is a basis of insurance recovery for CFS because my fellow silver tongued devils can just plunk "work environment" in the blank where a demonstrable cause should be.

Insurance companies are rooting FOR Mikovits.

Rants and snarky may be in, but it's neither professional nor scientific. Too many egos in the mix between the WPI, Kings College, and Imperial College as it is without adding nasty comments without citations to back up the assertions made. It's too bad this discussion went nowhere.

There's actually a lot of context to all of these statements. It doesn't mean they should have been said to a reporter(who has been covering the WPI for a while now and to whom Dr. Mikovits was probably just venting, not that it makes what she said kosher, at least about the virologists involved- Simon Wessely, who provided the patients, can go fuck a tree for all I care. I'll call that guy a dirty motherfucker to his face, he has no credibility whatsoever) and since the part about the insurance industry wasn't a direct quote, it seems plausable that Dr. Mikovits could have just said something about the long history of improper insurance industry influence in CFS research, which is completely true.

1. There actually is a long and sordid history of insurance history involvement in CFS research. The UK's 'Gibson report' which I think reported it's results in '06, actually recommended opening a formal investigation on the subject of potential conflicts of interest among various psychiatrists and psychologists involved in CFS research and who have extensive affiliations with the insurance industry, which saves untold amounts of money by labelling CFS a psychiatric disorder and thereby not having to pay out on claims related to CFS disabliity. Many of the most prominant psych CFS 'researchers' who claim CFS to be a form of psychoneurosis are on the insurance industry payroll, with Peter White and Michael Sharpe being two prominant examples.

There is also a thing on the net, I can't find the exact link, but it's to an organized campaign by UNUM, the insurance company, saying 'UNUM stands to lose millions if we do not move quickly to address this increasing problem' and goes on to describe in detail how UNUM representatives engaged in a plan to go from individual doctor's office to doctor's office and convince them CFS was a psychiatric disorder.

2. The strong wording of WPI statements. As has been stated before, the WPI replicated their research in three independant labs before publishing, and Dr. Peterson reported at the Oct. CFSAC meeting that either the Cleveland Clinic or the NCI repeated the experiment again in a completely unrelated lab as kind of an initial replication study and they found similar numbers to what was reported in the Science paper. So while this doesn't make it infallible(or excuse allegations of misconduct), it's just that the WPI is confident in their findings.

3. All of the above is simply a preface to the main point of this post. Since the WPI is so confident in their findings, and since closely related viruses to XMRV are known to cause neurological disease and cancer in mammals, this is making a lot of sense to the WPI because it fits in with their existing work.

Dr. Peterson has for quite some time been following a cohort of patients who are all XMRV positive and who have developed gamma clonal t-cell rearrangements, among other immunological and neurological complications, which I think are predictive of cancer and are indicative of persistant viral infection, with many of these patients having developed mantle cell lymphoma. It was because of this research that Dr. Mikovits became interested in working for the WPI in the first place.

Andrea Whittemore, Annette Whittemore's daughter, is XMRV positive and has been very ill for the past 20 years since around the age of 11 or 12. To Annette Whittemore, this is about fighting for her daughter's life. For the past several decades there has been basically no government, medical, educational, instutitional, etc. assistance for CFS anywhere in the world. For all intents and purposes, this truly is the WPI against the world. So if the WPI seems more than a little pissed off, it's basically because they have every right to be, and everyone commenting on how 'indignant' CFS patients(and possibly researchers) are have no fucking idea, no idea at all. (Note: I'm still not saying the virologists should have been accused of misconduct(although Wessely himself is fair game); I'm just trying to provide a little context is all)

Link to presentaion by Dr. Peterson on mantle cell lymphoma cohort- http://www.scivee.tv/node/7030

Andrea Whittemore, Annette Whittemore's daughter, is XMRV positive and has been very ill for the past 20 years since around the age of 11 or 12.
We are left with few options.

Either a 11/12 year old girl is participating in orgies and/or intravenous drug use, thus got infected with 'XMRV'.

Or something else is afoot.

Because XMRV is not spread via saliva, or it would have the same epidemiology as every other saliva-born virus (cold, flu, EBV, HSV-1, CMV), and there are no infected healthy controls (as I keep saying).

This makes no sense.

Edited 3-31-10, 11.16 am-- I want to make it 100% clear here that I am not actually suggesting Andrea used IV drugs or participated in orgies. This is reductio ad absurdum to demonstrate that this alternative is absurd, ie, there is something weird going on with XMRV epidemiology that does not make sense.

I don't know about the whole 'not spread by saliva' thing, in fact I think you're the only person I've read say that. FeLV, the cat version of XMRV, is known to spread by saliva, and the only thing I've heard about XMRV and saliva(and tears) is that it's not proven, not that it doesn't happen. From what I've heard there's every indication that XMRV would be spread by saliva.

And saliva borne isn't the same as respitory borne, is it? Cold and flu viruses aerosolize, which XMRV is not expected to do, so that's comparing apples to oranges.

Also one interesting thing is that there have been many clusters of Myalgic Encephalomyelitis reported in the literature(an alternate name being Epidemic Myalgic Encephalomyelitis no less), and CFS got it's start as a result of the CDC renaming what is considered to be a classic M.E. outbreak in Incline Village, NV and other locations around the country in the mid-eighties, with one of the early names for it being 'Tahoe Flu'.

M.E. has been reported to occur in both sporadic and epidemic form since 1934 when an outbreak occured in the Los Angeles County Hospital which was reported as 'atypical' or 'abortive' poliomyelitis, and was reported by Alexander 'Sandy' Gilliam, who went on to become Surgeon General of the U.S., so it wasn't just some chump who documented it. M.E. has historically been reported in epidemic form, often hitting schools and hospital staff, with the Royal Free Hospital in the UK actually having to close due to lack of staff as a result of an outbreak, with many of the affected suffering lifelong disability.

An association with enterovirus has been hypothesized in many of these outbreaks, so one hypothesis is that a pre-XMRV positive group is exposed to an outbreak of enterovirus which disrupts the immune system and makes everyone fall sick due to pre-existing XMRV infection. As to why this occurs in schools and hospitals is the subject of question, maybe it's contaminated vaccines. I realize I might sound like I'm venturing into kook territory here, so I'll go ahead and make it clear that I'm just hypothesizing. The point is that research needs to be done before dismissing it out of hand. Alternatively, maybe it's two(or more) seperate illnesses that just present similarly.

Also what do you mean about no infected controls? The Science XMRV/CFS study found 4% of the controls to be XMRV positive and the second XMRV/prostate cancer study found 6% positivity in controls, along with the PLOSOne XMRV/CFS study referencing an as yet unpublished study done by the Japanese Red Cross which found a 1.7% prevalence in Japanese blood donors. That's a lot of positive controls, and that is one of the main sticking points with XMRV negative studies, with the negative studies(0/598-German prostate cancer/XMRV study,0/139-Irish prostate cancer/XMRV study,0/186-PLOS One XMRV/CFS study) finding 0 positives, and one, another German XMRV study, only finding like 2 positives. The whole point is that the three that didn't find any out of 914 people should have at least found some background XMRV. I'll post the totals for the studies done so far in another post.

No single cause makes sense for CFS. The condition is so loosely defined that I'd be amazed if everyone who fitted into the catergory of 'CFS' had their fatigue caused by the same thing.

I'm suspicious about this XMRV news, and the WPI seem to have an unhealthy confidence in their data, but we'll have to wait and see. I think they're probably honest, passionate and misguided.

I think it's very likely that Wessely wanted to get a study out as quickly as possible, as he's concerned that attributing a physical cause to CFS will alter patients' beliefs and behaviour in a way which will worsens their condition. I don't think this means the study will have been deliberatly skewed, but it might mean it was less thorough than we would have hoped. I also understand why some will be suspicious of any study related to him. He openly said that CFS patients should be discouraged from believing their illness is caused by a virus, even if this is in fact the case (quackery's allowed in psychiatry).

I saw Dr Klimas was speculating that XMRV could be primarily transmited from mother to child. At this point, all speculation seems a little pointless. When further replication stuides are in, we'll know if it's worth trying to puzzle out what the relationship between XMRV and CFS might be.

It is also completely absurd. How do you file a claim for compensation for CFS by intimating viral causation?

It would require a tidy portion of the UK population to contract CFS from toiling away in dreaded but heavily insured Welsh XMRV mines.

As it stands now there is a basis of insurance recovery for CFS because my fellow silver tongued devils can just plunk "work environment" in the blank where a demonstrable cause should be.

The point of the NHS (National Health Service) is that there are no claims to an insurance agency, it's paid from the government coffers. If I wanted to turn up at my Doctors with a "Slightly achy little finger, it's worse when i twist like this" I could and not be charged a penny at point of service. A prescription charge of £7.20 per item covers everything from the £1 pack of Amitriptyline tablets to the £343 for 30 Pramipexole.

Since the government holds the purse strings for the NHS, unemployment benefit and disability allowance it's in their best interests to get a cure sorted, a course of medicine\treatment and maintenance doses is probably still costing less than benefits and allowances and the person can now function well enough to pay taxes.

add on to my post above: My reason for thinking the WPI are 'misguided' is largely emotional and based on my own smell test. They've not handled the PR well since the paper in Science, but everyone seems to think that the paper itself was a good first step. They could well have found something really significant. They're clearly very excited by it, and see it as a way to hit back at people like Wessely, who they quite obviously hate.

Most scientists might not have noticed, but the initial paper in Science has a few snide attacks at the psychological view of CFS, just as the London study and it's promotion included attacks on the WPI that many did not notice. It was stupid for the WPI to be the first to make all this overt, and that makes me think they're not terribly savy, but what matters is whose results stand up in the long-run.

Also - I've just seen the WPI are now primarily selling their culture tests for XMRV, over PCR (they say that any profits are then put back into research funding). Aren't culture tests more likely to give false positives?

Once again, people seem to have tunnel vision. Either it's a retrovirus and nothing else is looked at. There have been many mass misdiagnosis in history, scientists have just become technicians for the CDC so it is more likely to blunder in today's undemocratic scientific environment. Some people with CFS do seem to be just suffering from depression/anxiety, while with others there seems to be something really there.

People need to start looking at other causes other than retroviruses that usually fail all of Koch's postulates. Toxins like mercury, AZT, severe stress and drug abuse and Mycoplasmas have all been linked to ill health and diseases like CFS and AIDS. Google an article in the Miami Herald called "Is hiv Guilty?" a great debate that took place between some eminent scientists.

People need to start looking at other causes other than retroviruses that usually fail all of Koch's postulates.

One thing I always dislike about the anti-science crowd, like cooler, is that they think that scientists aren't looking into new ideas all the time. Of course they are. When they find that the evidence doesn't support these new ideas, they disregard them - unlike the anti-science crowd, which keeps clinging to them, no matter how much evidence there is against them.

The two studies used different primers so is it possible they found something that matches one set of primers and not the other?

John--
From what I've heard there's every indication that XMRV would be spread by saliva.
Its not.

Because if it were, +40% of the population, minimum, would be XMRV positive. I would expect more of the 60-80% range, actually.

Reno found 0%.

The Science XMRV/CFS study found 4%...
No they didnt. That number, apparently, is their PCR false-positive rate.

gf1-- I would find the switch from PCR to culture very, very, very odd. Culture is rarely used (ancient technology, 1948). Sometimes influenza, sometimes herpes. But if PCR/immunoassays are available, you use them. Theyre cumbersome.

I mean, their PCR 'works', right? So why would they switch?

cooler-- No one cares what an HIV-1 Denier thinks about carrots, much less XMRV.

Smurfette-- Possibly! Thats a problem I have with patient samples and the env gene. However there are portions of retroviral genomes that very well conserved (example: HIV-1 major homology region in gag). If the virus mutates away from this sequence, the viral 'core' doesnt form properly.

Im assuming the MLV primers used in this second study used 'MHR' directed primers.

Yes, ERV, coming from someone that can't even describe the experiments that proved HIV was lethal that justified AZT's release in 1987 I don't take that as an insult. Perhaps you could study carrots instead.

Because if it were, +40% of the population, minimum, would be XMRV positive. I would expect more of the 60-80% range, actually.

This is total conjecture.

Things aren't always evenly contagious during all stages of infection, and until we have a well validated antibody test, even just basic exposure is a huge unknown. Maybe some are more susceptible to infection than others. Maybe an 11 year old kid got it before birth from her mom but symptoms didn't become apparent until the hormonal changes involved in puberty. Maybe some folks have higher viral loads in saliva or whatever than others. Maybe young folks came into some direct contact with others' blood -- most people aren't totally careful at all times with blood, unless they know they have reason to be. We don't know jack about any of that.

Drawing any conclusions at this point in the game is madness with a virus for which we know basically nothing about behavior over time. If your entire "it doesn't make sense" is based on this, I don't quite know what to say to that, except that you're not taking into account the many real-life variables in infection rates, about which we know basically nothing in the case of this virus.

XMRV research may pan out with a connection to CFS, and it may not, but we're so early in this game that we don't even seem very solid yet on how best to test for it, much less solidly identify its routes of transmission and the factors involved.

Re: saliva transmission and epidemiology

Tuberculosis is airborne but only 5-10% of the U.S. population tests positive for the bacteria. I don't know if it being a bacteria vs. a virus makes a difference.

ERV - This is not my field so I didn't understand your reply about the problem with patient samples and the env gene, but thanks for the reply. I will try to figure it out unless someone can explain it to me. :) I just wanted to know if both studies could be valid and it sounds like that is possible.

Smurfette,

The UK study used two different sets of primers to look for possible viral sequences. One set of primers targeted a sequence that's supposedly specific to XMRV. That set should only amplify XMRV, and not any similar retrovirus.

The second set targeted a different sequence, one that would be present in XMRV but also in most related murine retroviruses (MRVs). That set should apparently amplify most or all MRVs, including possible XMRV variants that might have mutations that affect primer set 1.

Of course, the UK study didn't find viral DNA with either primer set.

It's still possible that the use of different primers could explain the difference between the original WPI study and the recent UK study, but it doesn't seem very likely. It would require that some of the UK patients did contain an XMRV-like virus, but one that was mutated in both the XMRV-specific sequence (primer set 1) AND in the sequence that's usually the same across all MRVs.

Not impossible, but pretty unlikely I think. Other explanations seem much more likely to me. (Flaws in one or the other lab's PCR method or technique, patient differences, etc.)

"The point of the NHS (National Health Service) is that there are no claims to an insurance agency, it's paid from the government coffers."

You are right here. However Dr Wessely has connections to a multinational health insurer so any discoveries will effect that companies current policy internationally which is not to pay out on psychological conditions. He is also on the board of a company who sell CBT and GET to Englands national health.

I am not saying wether Dr McClures study has been gamed or not but in my books some things she is quoted as saying in the media destroy her credibility.

She made a big deal out of emphasising that the laboratory their samples were tested in have never housed any of the murine leukemia viruses and that they were certain their samples were not contaminated.
She had no reason to defend her study results for contamiantion becuase they found nothing. The only possible reason for her to say this was to imply that nthe WPI study was a result of contamination.
She must know that if this were the case then the approx 200 healthy controls WPI tested would have has similar numbers of positive results to the 100 CFS/ME patients but instead the results were markedly different. 67% versus 3.7% of controls positive for XMRV. Just as well they did a lot of controls becuase this bolsters their results. I watched a video of presentations at the CFSAC conterence where retrovirologist of 40 years Dr John Coffin said the possibility that these results were caused by contamination were very very remote.
Why does Dr McClure make delibratley misleading statements which are completely unessessary. She doesnt even need to mention contamination as she found nothing. No matter what she says she was implying that the WPI study was contaminated and she must know its unlikely.
I don't know which study is right but I don't trust McClure or Wesselly. Why did they need to do a study before everyone else then make misleading statements. Its usually impossible to get funding for any research for ME but they got their funding really quick and made sure they got the jump on any further studies to come. I am suspicious.

The Widmore group used fresh leukopacks for their healthy controls. They used frozen samples for their disease samples. They say there were 101 disease samples and their reference for these samples is DeFreitas et al PNAS 1991. DeFreitas didn't have 101 patients. There were 30 patients from two groups.

Where did the other samples come from?
How old were the samples?
Was there a correlation between age of sample and XMRV status?
Were these samples maintained by one person for twenty years or more, CFS websites say they are all from Daniel Petersen?
Did they test disease samples that were not from Daniel Petersen?

Interesting, the antibody part of the Science paper was done with only several samples.

Were these the same samples DeFreitas used?
If so, what were they called in the DeFreitas paper?
Were the HTLV positives XMRV positive?
A simple explanation, the DeFreitas samples were from blood relatives who had a disease in common, their body's made antibodies to many things, so they are positive to HTLV and MLV and XMRV?
How are the DeFreitas and Petersen samples important for most CFS patients who are not part of a family with symptoms or in a group of people that got sick together?

The paper states that "Samples were selected from several regions of the United States where outbreaks of CFS had been documented", and gave the DeFreitas paper as a reference, not that the same samples were used in the DeFreitas retrovirus study.

A lot of your other questions are answered on the WPI's FAQ-
http://www.wpinstitute.org/xmrv/xmrv_qa.html

spit- And you summed up nicely why ERV got so pissed at crazybitch for going all crazy! We don't know enough yet to come up with any solid conclusions, so flat-out slandering another lab is ridiculous.

However not knowing enough, and making an hypothesis are different things. ERV is making an hypothesis, if more studies come out to cement the link between CFS and XMRV, I'm sure she'd change her mind, however given the studies that have come out, and given where the flaws in those studies most likely lie, it doesn't look good for CFS-XMRV linkers.

Jon -- when getting pissed at "crazybitch" for going all "crazy", it might be a good idea to look for any background that may explain the reaction.

The Imperial College researchers came out into the media with extremely strong statements about their results and about the Science study. They implied that Mikovits and crew must have had contamination problems. One of them said to the press that the original study was essentially published far too hastily (funny, given that their own study was done very quickly and got 3 whopping days of review). They have implied further that the research crew for the original study was pushing anti-retroviral treatment -- they have not been doing any such thing -- and have implied problems with the fact that the Reno lab is peripherally connected with a private lab that offers a commercial XMRV test.

Seriously, look it all up; I'd link things, but I honestly don't have a heap of time at this particular moment. And I don't really want to get into a load of finger-pointing, anyway; I think both teams could probably work on the whole humility thing. But some of the shots fired in the press by the authors of this new study make it less than shocking to me that this is turning into a pissing match -- if you're going to comment on that pissing match, it might make sense to look into the whole damn thing before calling people names and telling anybody to "grow the fuck up and learn to be a scientist."

Honestly, with some of the quotes in the press from this new group, I'd be plenty miffed, too, if I were one of the researchers from Reno. But then, I also wish people would take press accounts of things with a grain of salt, because quotes out of context and paraphrases by journalists can often just make the whole thing murkier. Which is true both for the quotes from the Imperial researchers, and for these quotes from Mikovits to the Reno Gazette.

Everybody needs a big ol' chill pill, as far as I'm concerned. Including ERV, next time she considers going on this size of a tirade with apparently zero attempt to understand that there is a political conflict here as well as the scientific one. Oh, how we all long for a scientific world without political conflict. Pretending that we have one is just silly.

As for the "hypothesis" -- sure, we all make guesses, and we all talk out of our asses sometimes. It's one of the joys of science. I've been waiting, though, for ERV to finally put out why she thinks an XMRV connection to chronic fatigue "makes no sense", because she's said so several times without actually saying anything about why -- hell, I'm no virologist, maybe there's something about the physiology or something that I'm missing. If this is the whole "why" part to her repeated assertion that it doesn't make any sense, though, I'm afraid I'm left both pretty unimpressed and more sure than ever that epidemiology should best be left to epidemiologists.

spit -

Based on the press I can find, I don't agree with your defense of Mikovits at all. Here is the press release from Imperial College on the UK study. Here is another story on the UK study.

McClure does discuss the issue of contamination, which certainly seems like a suggestion that WPI's methods might have been faulty. But she doesn't imply that WPI is pushing retrovirals, only that some people have raised the idea of treating CFS with antivirals, which is clearly true. If you can find a link where she goes further and implicates WPI directly, I'd be interested to see it.

In contrast, Mikovits accuses the UK group of what can only be called research fraud: deliberately 'skewing' their study to ensure they would not detect XMRV, to somehow benefit UK insurance companies!

Implying that a research group got the wrong results because they didn't do enough to control contamination may be upsetting and it may be wrong, but it's within the normal bounds of fair scientific exchange. Accusing a group of research fraud and collusion takes things to an entirely different level. Unless Mikovits has substantial evidence to support her claim, it's an inexcusable thing to say.

Even if WPI is right about the underlying science, Mikovits's comments are reprehensible and should be an embarrassment to all associated with her.

qetzal -- I'm not particularly trying to defend anybody, to be honest. I understood the initial strong responses from WPI, which were less personal but no less strongly worded than some of the things said by the folks at Imperial. At this point, I think the whole lot of them are acting like petulant children, now including ERV.

It would honestly take more googling patience than I've got right now to go hunting in depth, for which I apologize. The independent, the guardian, and bbc all immediately popped up with articles on the 6th, some of which made my jaw initially drop from the sheer hubris of some of the quotes. It doesn't really matter, except to say that it isn't like this nice little careful research team from the UK came out with a study that evil nasty researcher X didn't like, so she said stupid mean things about them. The UK team came out swinging.

And again, I'd caution anybody in any situation against taking quotes presented out of context in the popular press (here, the Reno Gazette Journal, which may be a fine paper but I'm doubting has loads of award-winning science journalists) incredibly seriously at all times. That goes for all sides. When I list the things that Imperial has "implied", I'm basing a fair amount of that from media write-ups, too, it's worth noting, which means I've also been trying to apply the same grain-of-salt to selective quotes and paraphrases from the UK researchers.

What makes it all the more frustrating is that the science here is so, so important to do solidly and well, to finally maybe find a helpful direction for so many people who are suffering greatly and who have been caught up in a medical-political shitstorm for decades, and to make sure that we don't have some new epidemic running around just under the radar in our blood supply. I mean, this is some serious shit, if WPI is right.

On this: "They skewed their experimental design in order to not find XMRV in the blood."

I can read that as being a frustrated and sloppy way of saying that their experimental design would skew results away from finding XMRV, which is an ok thing to say, or read it as a clear accusation of fraud, which I agree would be pretty uncalled for.

Before I get accused of parsing too carefully, here. From your own link, McClure:

"The US study had some dramatic results that implied people with the illness could be treated with anti-retrovirals."

A careful reading gives the explanation that she's not saying that the study said such a thing, or that the researchers did, I'm well aware. But it's a sloppy way to say it, and it does wind up linking anti-retroviral stuff to the original paper. Hell, linking Mikovits to anti-retroviral treatment now is something even ERV got caught up in. Mikovits has said nothing about people running out and joyfully getting on AZT, to my knowledge, but is suddenly being accused of nearly such a thing in a rather... strongly... worded blog post by another scientist.

At some point, these things become frankly pretty stupid -- quotes about misunderstandings about misquotes about something somebody said three weeks ago. My point was more that if you're going to step into the middle of it, it's probably a good idea to know why the scientists in the red shirts are pissed at the scientists in the blue shirts before you pick up your gun and pick a side to shoot at.

I think Mikovits behaved the worst in the media, but I also think that if you're not aware of the history and terms of debate which surround CFS, you're unlikely to be able to fairly assess her comments. It was stupid of her to provide quotes which could be read devoid of context, but that's largely a PR mistake.

More importantly...

I've just seen that a group of 15 CFS patients from the UK who paid for the VIP XMRV blood tests privately have recieved their results and made them public (it's difficult to arrange to have the test done in the UK, so this group coordinated)

Only one was postive for XMRV with both the PCR and culture test.

Seven more were positive with only the culture test.

Seven were negative for both.

These tests were performed before VIP changed to what their press release described as an improved culture test. There was no healthy control - this wasn't done as part of a study; we also don't know how the patients were diagnosed as having CFS. I thought it might be of interest here though.

the author of this blog seems like such a hateful person...wonder what happened to her/him.

The author is a graduate student, and having been there myself, some decades ago now, this is a phase that many passionate graduates go through. Sometimes the mind broadens out afterwards, but during those intense studying years, where the focus is on logic, profound concepts, and hair-splitting precision, the mind becomes shifted towards the "left-brain" side, and such a mind just cannot stomach anything that anything less than hard fact or deductive reasoning.

The thing is that, very often the most brilliant minds - the rare scientific geniuses of history - have always had in interest in developing and refining their more intuitive "right-brain" side, as a sort of separate and very different project to the development of their logical / scientific side.

Once you do this, once you manage to bring the right brain online, strangely enough, it deepens your scientific understanding. This is probably because you develop a greater ability for analogical and lateral thinking, a greater ability for creative thought and intuitive leaps, and develop a greater scientific imagination, which are all extremely effective instruments to have inside your growing mental toolbox.

But this right brain development often only takes place once you finish your studies, and the pressure is off. In fact, some of the most amazing scientific advancements, Newtonian physics for example, were conceived after getting away from the university environment.

But my above comment is off-topic. What I really wanted to say is this:

VESTED INTERESTS OF SIMON WESSELY

One of the co-authors of this study, Simon Wessely, has a vested interest in the outcome of such virus studies. Simon has staked his entire academic career on the idea that neurological diseases like chronic fatigue syndrome are caused by purely psychological factors.

Therefore Simon Wessely would be the last person you would want in a study like this: if he finds the virus in CFS patients, he shoots himself in the foot, and his career may never recover. So I wonder just how hard he looked for this XMRV virus.

The odd thing is, the authors declared in this study that they have no competing interests: not true! It is very much in the interest of Simon Wessely to not find this XMRV virus.

VESTED INTERESTS OF SIMON WESSELY
OH MY GOD! WHY HAS NO ONE TOLD ME THIS BEFORE???!!!?!?!

NO ONE has said ANYTHING ABOUT THAT on this blog in the past 3 weeks!

If you look up "Wessely School" on Google, you will find that this name is given to a powerful network of of psychiatrists that have been manipulating research policy behind the scenes at the Centers for Disease Control for decades.

The Wessely School are responsible for pulling the CDC away from biochemical explanations chronic fatigue syndrome, and towards their bizarre idea that diseases like CFS are purely "All in the MInd". Somatization, they call it at in the Wessely School.

"Somatization" is their psychobabble idea that "you think yourself ill".

To this very day, somatization is STILL the CDC's official explanation for chronic fatigue syndrome. Somatization is like a medieval model of disease!

This is why much of the CFS patient community dislike Wessely and Co, who have misappropriated research grants that should have gone into virological and biochemical research on CFS, and directed this money into their "psychobabble" theories on CFS.

Because of the Wessely School's grip on official government policy and research, both in the US, the UK, Australia, and other countries as well, it was necessary to set up private institutions like the Whittemore-Peterson Institute, in order to conduct genuine CFS scientific research, to try to bring CFS back into the scientific paradigm, rather than try to understand it via psychobabble.

Hip,

And of course, the folks at WPI have no vested interest in being right about XMRV, do they? Like, if XMRV turns out to be some artifact, they won't suffer huge blows to their careers. Especially now that they've started selling XMRV tests to patients.

/sarcasm

We've been through this 20 times already. BOTH sides have vested interests here.

P.S. Do you honestly think Wessely should have declared his belief that CFS is psychosomatic as a competing interest?

P.P.S. Do you know what "misappropriated" means? Are you seriously claiming that Wessely misappopriated funds?

qetzal:

In answer to your 1st question: "Do you honestly think Wessely should have declared his belief that CFS is psychosomatic as a competing interest?"

Not that in particular. It is generally very much in the interest of Simon Wessely not to find this XMRV virus. His personal ideology at certainly stake, but also Simon Wessely works for companies that supply Cognitive Behavioral Therapy, which are the direct financial beneficiaries of his psychobbale CFS etiology (but why don't you know this fact?). Then there is the insurance company connections to the work of the Wessely School (presumably you didn't know that either?). The last two at least are conflicts of interests that should have been mentioned.

In answer to your 2nd and 3rd questions: "Do you know what "misappropriated" means? Are you seriously claiming that Wessely misappropriated funds?"

Yes. And absolutely yes. The nonsense "somatization" notion is more akin to a cult religion than a hard science. CDC funding is for SCIENCE. Can you name any other chronic illnesses that can leave you bed bound for decades like CFS, yet which are merely perpetuated by your belief system, ie, by somatization? No you can't because there are none.

The Wessely School has masqueraded this oddball somatization theory of CFS as a science, in order to gain money. Ergo, misappropriation.

In any case, use a bit of savvy: you have to ask, what is a PSYCHIATRIST doing in a retrovirology study? Wessely knows nothing about this subject, and nothing about the immune system, the malfunction of which is the basis of many CFS symptoms.

Indeed, at the Lord Lloyd inquiry into Gulf War Syndrome in 2004, Wessely admitted that he knows nothing about immunology: when asked by the inquiry chairman what was meant be a shift from TH1 to TH2 Wessely replied, 'Please don't ask me what that means because I don't know."

I those lack of qualifications do not ring alarm bell in your head, I don't know what will.

Hip,

Misappropriation: the intentional, illegal use of the property or funds of another person for one's own use or other unauthorized purpose.

Convincing someone to fund your research instead of someone else's is not misappropriation. Not even if your research idea is wrong. Crackpot allegations like that don't make your argument very persuasive.

I don't need to ask myself what Wessely was doing in this study. The paper spells it out. He was "Responsible for providing samples and associated data from a well characterised and valuable cohort of subjects." You don't need to know retrovirology or immunology for that.

And yes, I know there are arguments that the patient cohort was inappropriate. Perhaps it was. Even if so, Wessely's lack of immunology knowledge is a red herring when it comes to evaluating the PLoS ONE study.

On competing interests, WPI and VPX are now selling XMRV testing to patients. Clearly they have a direct financial interest in XMRV being the cause of CFS (and/or other diseases). So you'll agree that all their future publications on CFS should disclose that, right?

Qetzal, are you any closer to proving the VIPDX-Oswald link?

WPI is a non-profit research institution funded by a family with a very sick child. An infinitesimal segment of the CFS population is sending their blood to the Reno lab for a $450 test. VIPDX is not an offshoot of WPI.

If VIPDX was motivated by potential profits of XMRV culture and PCR tests, don't you suppose they'd be advertising these tests? They'd want to be doing as many of them as they could, right, while other rival labs were playing catch up? The opposite is taking place. Not only is VIP *not* advertising their test, there's currently a 6 week lag between the time one orders a test and the time one gets the tubes in the mail. Add on to that another 3 week wait for the results.

The whole problem with the VIPDX XMRV test is that it created *the appearance* of a conflict of interest. I suppose it's time to point out that an appearance of a conflict of interest is not the same as an actual ethical breakdown. But the appearance of said ethical breakdown does indeed create an opportunity for the whackos to slither out of the online woodwork and spew their ridiculous conspiracy theories.

I suppose it's time to point out that an appearance of a conflict of interest is not the same as an actual ethical breakdown.

I completely agree. Can we also agree that applies to both WPI and Wessely? Or is it OK to allege misappropriation and imply fraud as long as only Wessely is being targeted?

Of course. It's absurd to accuse Wessely of bias and conveniently ignore the blatant bias of WPI. I'm not particularly offended by Wessely. I am a bit concerned that both groups' studies so perfectly validated their pre-existing positions. But neither the WPI, VIP, nor Wessely is Darth Vader.

Is it even fair to say that funds for CFS research is intended for 'science'?

I have no idea if Wessely's understanding of CFS is correct, but his work often seems quite openly outside of the realm of science. Something I respect about him is that, at least in his early papers, he was clear and honest about the fact he saw his research as a branch of speculative philosophy and psychology rather than medicine or science. I think that CFS is a really interesting case study for the current limits of medical science, and what happens when society requires an understanding for an illness before we are able to reasonably provide one. We've given undue power and influence to those who claim to 'know', with little concern as to whether their claims are well supported.

We like to be able to have experts to turn to, and so we pretend that we do rather than face the reality of our ignorance. I've seen psychology described as the religion of the 20th century in a few places, and while there is much good, solid work being done in psychology, some of it does seem decidedly faith based. I think that we owe patients more than this.

In regards to the London XMRV paper, I'd be amazed if Wessely's selection was able to explain the differing results from the WPI. Unless it was outright, intentional fraud, that makes no sense.

Hand on heart here: who in this debate, can honestly say that they have been following the behind-the-scenes politics of CFS/ME for many years before this XMRV story came out? XMRV is just one chapter in a decades-long history of dirty politics.

Learn a bit about these background politics, or else you just be a CFS/ME dilettante.

Learn about the misappropriation of chronic fatigue syndrome funds ($13 million) that took place at the CDC ten years ago.

Qetzal, you say "Convincing someone to fund your research instead of someone else's is not misappropriation". Well I am not talking about just the research funding, I am also talking about diverting healthcare funds, that are funneled into Wessely's CFS treatment companies (CBT/GET treatment), as a result of the Wessely School psychiatrist's insidious control over various governments' CFS/ME policy. Quite a few CFS/ME patients that have had the Wessely CBT/GET therapy have gotten worse as a result. CFS/ME patients in the know think Wessely is a quack. Thus government and healthcare insurance money is getting funneled into Wessely School medical quackery, quackery that masquerades as science. To me, that is bad news.

DID YOU EVER STOP TO THINK: WHY SHOULD A TINY GROUP OF PEOPLE LIKE THE WESSELY SCHOOL HAVE SUCH DOMINANCE OVER SETTING OFFICIAL GOVERNMENT POLICY on CFS? It is undemocratic. The WPI, and many other, PROPER scientific CFS organizations, are pushed aside, and have little or no power at the CDC. WHY DOES THE WESSELY SCHOOL HAVE THE EAR OF THE CDC? You must make an effort to read the background history of CFS/ME; don't be lazy. FInd out.

Qetzal, you are not Simon Wessely in disguise, are you? Your style of argument and rhetoric is uncannily similar to Wessely's. To win an argument, Simon Wessely frequently dwells on linguistic pedantry in order to divert attention from the more salient facts of the discussion. That is his trademark tactic in argument. Which is precisely what you are doing.

Hip #62:

LOL! No, I'm not Wessely. You really sound a bit paranoid.

No, I haven't followed the CFS politics at all. I only became intrigued after reading about the conflicting XMRV results on various blogs (here, Terra Sigillata, White Coat Underground). If that makes me a "CFA dilettante" so be it. Doesn't make you right or me wrong. (Or vice versa.)

You ask why the "Wessely School" has the ear of CDC & gets all the funding. First of all, I'm not taking your word for that. Typing your conspiracy theories in all caps doesn't make them convincing.

But even assuming they do, there are simpler explanations. For example, CDC and the funding agencies could simply be convinced that the evidence favors the Wessely School.

As I've said before - Wessely may indeed be completely wrong about CFS. WPI may be completely right. Both may be wrong. But if you want to convince people that Wessely is wrong because he exercises "insidious control" over CDC & insurance companies, "misappropriates" research funds, and so on, you're going to have to bring a lot more to the argument than a caps-lock key.

Qetzal: you said: 'If that makes me a "CFS dilettante" so be it'.

Adopting this "so be it" stance is more-or-less the same as saying: "I will not put in any effort to find out". Fine, but at the same time, you also say "I'm not taking your word" [that the Wessely School have an unhealthy dominance of the CDC's agenda on CFS].

So: (a) you are not taking my word (which is of course a commendable general attitude), but at the same time, (b) you will not research this subject yourself either.

So that goes nowhere.

Just typing "Wessely School" into Google would be a start, but perhaps you are too busy.

If, like myself, you have had the misfortune of catching CFS, you obviously tend to make considerable effort to understand what is going on, not just scientifically, but politically also.

PS. I know some people with quite bad CFS, who have been tested negative for XMRV. While XMRV may turn out to be an important causal factor for CFS/ME, it is only one of many viruses that are involved in this condition. We will have to wait and see.

The point I am making is that CFS needs to be studied by biochemists, virologists, bacteriologists, immunologists, neurologists, infectious disease experts, as this is a real physical disease, not an imaginary psychological one as Simon Wessely would have you believe.

The entirety of Judy Mikovits' Jan 22 talk is now posted at:

http://www.prohealth.com/library/showarticle.cfm?libid=15114

To the person who linked to my page from Wikipedia, the 'bartender' comment left here was in response to an article written by the NYT.

"Rather than just doling out money to far-flung researchers, the Whittemores wanted to employ their own scientists who would be devoted full time to the cause. In the spring of 2006, they met Dr. Judy A. Mikovits, a virus expert who had spent 22 years working at the National Cancer Institute. She had left the institute in 2001 to get married and move to California, where she went to work for a drug development company that failed. She was tending bar at a yacht club when a patron said her constant talk about viruses reminded him of someone he knew in Nevada. That person was a friend of Annette Whittemoreâs. Dr. Mikovits soon found herself at a conference on chronic fatigue syndrome."

Get better Google-Fu.

That is a good anecdote about Dr Mikovits.

Hip,

You're right. I'm not interested in googling to confirm your allegations about Wessely.

If you only want to convince me that Wessely's views about CFS predominate, I'll take your word for it. If you want me to believe that he's actively engaged in a conspiracy to suppress alternate views, you'll have to give me more than your say-so to get me to look into it.

For a start, Google returns 5000+ hits on "Wessely school." I have no interest in chasing down that many rabbit holes. Especially since this topic is highly politicized, as you point out. Such topics tend to elicit all kinds of unsupported (and often unsupportable) statements by partisans on either side. Obviously, this topic is no different, and so far, neither are you.

If you can provide a link that you believe makes a good objective argument that Wessely is behaving unethically, fine. If you want to stick to hand-waving & unsupported allegations, I guess that's fine too.

P.S. I think it's worth noting that to date, the only unethical behavior I've seen in this controversy has come from Mikovits. (See my comment #46 above.) Perhaps the UK group has also been unethical, but I have yet to see a clear example of that. Feel free to point one out.

There are a lot of extreme reactions to Wesselyâs work. One of the problems with CFS is that it as a rather neglected area and patients feel the need to pick up some of the slack, often becoming rather emotionally involved while doing so. If youâre interested, Iâd suggest reading Wesselyâs papers, especially the early ones, and letting him speak for himself. He tidies himself up a bit for them, but most academics do. Some of his early papers were (from what I remember) quite open about his view that CFS is a social condition brought about by (among other things) altered expectations of medicine and a desire by patients to avoid taking responsibility for their own condition: such an approach is automatically appealing to much of the medical community, just as it will be viewed with hostility by many patients - when there's so little evidence to go on, and beliefs are determined by desires, different groups can end up with utterly divergent views.

Wessely suppresses alternative views in the same way that other academics suppress alternative views: by using their influence to channel funding to those that share their beliefs. This is especially damaging with CFS because their is so little solid evidence to go upon and so little funding to go around. I don't think it's a conspiracy or intentionally fraudulent, but I do think it's reasonable to be troubled by it. Given the natural appeal many of his views will have to those in positions of authority, there may be some soft corruption there - it really depends upon what you consider to be corrupt. I certainly don't think there's a deliberate attempt to hide a clear and treatable cause for CFS, but there probably is a desire to limit the social cost of CFS, and you'd expect this to have some influence the way different approaches were funded and assesed.

There are peculiarities to CFS which make the more widespread flaws of academia especially damaging, and I think this then seems even worse to those with a rather idealised view of the way science and medicine normally works. With Wesselyâs work there is also such a casual acceptance that those with CFS should be treated as if they are mentally disordered, seemingly as the default assumption, that it can seem disdainful â although Iâm sure he does not see it this way. I think that the hatred he attracts must rather bemuse him as he sees himself as a good man trying to help.

Thereâs a great book to be written on the way the medical community has responded to CFS â I think itâs a very interesting illustration of a lot of issues that surround the philosophy of science, medical ethics, the moral requirements of science, etc, etc. Itâs very difficult to get a clear summary though, and Iâm really not sure what I think about it all either. I think that Wesselyâs approach is unethical and unreasonable, but given the difficulty of the situation Iâm not even sure what the limits of reasonable and ethical behaviour should be.

Personally, I don't like the term conspiracy theory - in general, not just in this situation. Most people associate a conspiracy with one or more people masterminding some devious plan. In reality, deviousness can occur without such a plan or controlling , just by several elements aligning themselves to one goal, much as you often find in nature: that is spontaneous organization.

So spontaneous organization of bad elements is the way to understand what is going on with these problems in CFS/ME research.

So let us consider the bad elements that have aligned to be come much worse that they were just on their own, and that has then damaged the progress and patient care in CFS/ME.

Start with Simon Wessely, who has a this theory that CFS is all in the mind. When CFS patients counter this view, saying that their disease began with a powerful viral infection, and is therefore a real physical disease, Wessely counters this by saying that it is only the fear of viruses that are causing your disease. So you can't win with Wessely. Wessely is on record as asserting that ME is merely a âbeliefâ held by those who think they suffer from it; that ME patientsâ muscle weakness is âsimulatedâ.

As gf1 says above, "Wessely suppresses alternative views in the same way that other academics suppress alternative views: by using their influence to channel funding to those that share their beliefs". And Wessely does know how to wield power and influence very well.

So far, nothing particularly devious. But now take a second element: the insurance industry, and in particular, company Unum (previous called Unun Provident, www.unum.com), a major disability insurer. CFS is a nightmare disease for the disability insurance industry, simply because, unlike say multiple sclerosis, many people with CFS/ME become permanently disabled, but do not die. So if you get CFS/ME when you are a teenager say, that means the insurance industry will need to care for you for 6 decades say. With around 0.2% of the population having CFS/ME, this actually becomes a substantial financial burden for the insurance industry.

So, isn't it convenient that Unum found Simon Wessely, a professor nonetheless, who says that CFS does not exist. His academic output suddenly becomes worth billions to the insurance industry.

So naturally you start to get an alignment of elements here that can help each other out in their causes. Indeed, Simon Wessely has worked for Unum, and other Wessely School psychiatrists have insurance company connections (such as Peter White, who works for Swiss RE Insurance).

No conspiracy, just natural alignment of causes.

Now consider the fact that CFS/ME of look OK physically, and until recently, there has not been many good biomarkers for the CFS/ME disease, to verify diagnosis, which then allows the Wessely School and Insurance Company alignment of causes to operate, and indeed formulate and lay down the CDC's official categorization of chronic fatigue syndrome as a somatization disorder (= All in the Mind).

If there were decent biomarkers for CFS/ME, then it would be much harder for the Wessely School / Unum to uphold the doctrine that CFS/ME does not really exist, or is all in the mind. This is why the possibility that XMRV may be a major cause, and the biomarker, for some (but definitely not all) cases of CFS/ME has a huge political impact, in many ways greater than its scientific impact. All the CFS/ME patients are saying "Now do you believe us".

Whether our struggle to have CFS officially now recognized as a real disease by the CDC will come to fruition remains to be seen. Doing so will severely upset the disability insurance industry.

If you want some references on all this, one classic source of material comes from investigative journalist Hilary Johnson. Her book and website is called Osler's Web. See, for example, this Osler's Web article on how people started selling Unum's shares:

http://www.oslersweb.com/blog.htm?post=641069

See also the book Corporate Collusion, by by Margaret Williams, etc al. Here are some highlights: http://www.sophiaandme.org.uk/collusion.html

(The full book is available here: http://www.meactionuk.org.uk/Corporate_Collusion_2.htm)

I could provide many more refs, but I expect that for most people, as outsiders to the misery of CFS/ME, it is not their problem, and therefore you don't really care.

gf1,

Nice post.

I can easily understand such concerns about Wessely. I'm a practicing scientist myself, so I understand the way key figures in a field can have substantial influence.

Since scientists are human, we're prone to getting overly attached to our own hypotheses & beliefs. We supposed to guard against that, but it happens anyway. If a highly influential scientist does that, and if he also happens to be wrong, it can certainly retard progress in the field.

If someone wants to argue that Wessely's ideas on CFS are wrong, and that this is retarding the field because of his prominence and influence, that's more than fair IMO. My only objection is to the unsupported allegations of knowing malfeasance & fraud.

Again, thanks for offering a reasoned perspective.

Thanks quetzal.

I may have been too reasonable: I've just been reading some media interviews with Wessely and he really can be slippery - in a way that gets as close to dishonest as you can manage without crossing over. He's a strange character and I understand why some CFS patients obsess over him.

He's recently started to argue that the fatigue felt by cancer/ MS/ etc patients should be treated as a psychological condition, and it will be interesting to see how his work is recieved in areas with a firmer grounding in science than CFS.

LATEST NEWS!

Here is an interesting sudden development: Bill Reeves, who has been in charge of the CDC's chronic fatigue syndrome research program for 10 year, is out!

This news was released this Friday at 3pm.

Bill Reeves was another believer in the psychiatric model of chronic fatigue syndrome, rather than the biological model of this disease.

MOre info on this story: http://forums.phoenix-cfs.org/content.php?29-Dr-Reeves-Out-at-the-CDC

His sudden departure may reflect a welcome wind of change at CDC, in finally placing chronic fatigue syndrome within a proper scientific framework, and out of the mire of fringe psychological pseudoscience.

A great day for science.

Hip,

As I promised I would, I looked at all three of your links. None of them presented any evidence of malfeasance by Wessely or his "school." The Williams book makes a lot of allegations. Some of them would indeed be unethical if they're true. But she doesn't back anything up. She just says "evidence exists showing" whatever. If it exists, why doesn't she reference it?

Of course, I admit I didn't read the whole book. After skimming through for a while and seeing multiple unsupported allegations, I decided not to waste more of my time.

And the Osler's Web link? Is that an example of what you consider evidence? Guesses about why people sold insurance company stock at a certain day & time. Give me a break!

You may not like the term 'conspiracy theory' but it fits to a tee. I hope you find relief for your CFS.

Qetzal:

To be fair, unless you spend a few months looking into this, as many people with CFS have done, you cannot really get the full picture.

Either that, or perhaps you don't like using intuition; or reading between the lines?

But anyway, thanks very much Qetzal for skimming over those links. Since it is not even your area of interest, I must say it is pretty good that you did at least take a glance.

FeLV is to cats, what XMRV is to humans

http://www.psychologytoday.com/blog/complementary-medicine/201001/xmrv-…

I fear ERV has a major case of tourrettes....

ERV -

I am a patient so have no scientific background. My doc wont even give me pain relief and the pain is what makes me want to kill myself. Many days I find it incredibly difficult just to get out of bed not because of depression but because of pain damn it. People who have mental illness do not dispute it. If I had depression they could treat it and I would not have lost hundreds of thousands of my own money. Thanks to doctors telling folk theres nothing wrong with me I'm left actually concealing my illness with make up etc becuae the only place I'll get any care is in a psychiactric ward which is terrifying to me. So I get no benefits have lost 100's of thousands of dollars and my family offer no support at all thanks to Wesley and his kind. They know I'm not insane so the only conclusion they can reach is that Im a lay about even though they never come to visit too see how I actually am. Many patients have been driven to suicide and some died early and beacuse of Wesley and when my money runs out soon or the pain gets too bad to bear that might be where I end up. I can eat very little without my pain levels and whole condition worsening incredibly.
I cant eat I have no support and soon have no money. This is what Wesley etc have done to me for years and years.

You are a pig who thinks he's smart and I truly hope you get this illness, you deserve it. I have had years of abuse by people becuase they tell me I'm not ill and when you are very very sick trying everthing you can its sooo hard. People will read your blog and go and victimise very sick Patients who may end up killing themselves because of your blogging leading families withdrawing support for them. This has happened to a young man on a CFS list whos family kicked him out of home becuase they thought he was just taking them for a ride. They kicked him out in the middle of winter and he died the next day. It wasn't suicide. The most information we ever been able to get was that it was heart failure at 21 years old. This blog will be having horrible consequences for patients and you, Wesley etc should be prosecuted for what you are inflicting on patients.

Why don't you spend your time focusing on how XMRV in prostate cancer has turned up conflicting results and attacking those researchers. Whats with you that you need to spend all this time vilifying CFS researchers and yet there are discrepancies with XMRV in other areas.

Looks like in the XMRV monkey studies there was alsmost no XMRV found in blood but lots in other organs which may explain something or nothing. We don't know yet if it is or is not implicated in CFS. Why don't you just wait for science to tell us. What you are doing is simply harmful to patients and thats very sick indeed especially as the golden rule of medicine is "Do No Harm" Its is a rule Wesley has shit all over. There are 2 camps of researchers the pshyc and medical but I can tell you there is only one camp of patients. We are know we are physically sick and that other camp are hated because they are blocking any hopes we have of getting research funded. You say that most studies have not being replicated but I can tell there are many credible studies out there that no one has any money to attempt replication becuase of the pshycs like Wesley fighting to actually stop medical research and thats why we hate him. CFS gets less mediacal research money than rare diseases even though there are approx 17 million people affected.
I don't believe in hell ( actually I have no idea ) but sometimes I wish there was one for people who inflict a lot of pain on others. They dont deserve to get away with it. One can only describe a person like you ERV as a psychopath.

I know my writing ability is crap but its because of my illness. I actually score pretty high in IQ testing. I'm very sick not stupid and I know what pain is. Even the least intellegent folk know when they have a headache a sore tooth etc. No one questions animals when they lay around not well. Pain is a basic function of letting us know there is something wrong with the body.
People don't live miserable, painful, lonely lives like mine if they can help it.

@Florence: since ERV has never done you any harm, you might direct your ire elsewhere.

Side note: both labs did regular PCR, not Real-Time-PCR, so frankly, you both suck. What is this, 1993?

Harsh! Personally I doubt the existence of any type of PCR. I swear the machine puts little bands of random DNA in my tubes depending on whether or not I flossed the night before.

Here is an example of what YOU DO NOT DO if you are a professional scientist involved in a 'controversy'

The link to "what you do not do" is broken. Did you keep a copy/screenshot somewhere, so I can read it?
(sorry if it is somewhere in the Comments. I didn't read them all ;) )

That 'news' site apparently regularly takes down articles. Several times Ive tried to read stuff there (Google says it exists), but then I get a 404 when I click on the articles.

However I did save the text of the article, if youd like me to email it to you (send an email to my contact email *points up to 'contact' tab*).

Great discussion. As a cancer survivor I find this debate over the XMRV retro virus fascinating. I'm personally starting to think we may find XMRV in most every individual with a weakened immune system that had "some specific" vaccination during their lifetime. Love you blog - Pdazzler

yo pig. post my shit. or are you scared?

Ron-- ERV is a sentient creature. Sometimes it marks comments as spam for no discernible reason, and I manually approve those as soon as I can (today was a busy day, so no approvals till now). But sometimes, ERV blocks comments that dont break any rules at all, simply because it doesnt like a commentor or their comments (note, it let one of your three through, this one). I love it when that happens, and it just makes me love my blag even more.

My blag doesnt like you.

But I do.

Ill post your comments in a more current XMRV thread-- my commentors will LOVE them. (pro-tip: Im a chick)

The link to the Reno Journal is broken.
(Behind "YOU DO NOT DO")

That paper takes stuff down-- Im assuming it wasnt taken down because of the things Judy said, but here is a copy/paste:

Reno researchers dispute British challenge to virus discovery

BY LENITA POWERS ⢠lpowers@rgj.com ⢠January 13, 2010

Reno scientists who found a link between a retrovirus and people with Chronic Fatigue Syndrome are scoffing at a challenge from British researchers who claim the discovery was false.

Researchers at the nonprofit Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno made headlines worldwide last October when they reported discovering a new infectious human retrovirus, XMRV, in the blood of 68 of 101 people with Chronic Fatigue Syndrome.

In a story scheduled to appear Friday in the print edition of Science magazine, Myra McClure, a professor of retrovirology at Imperial College London, said her team of researchers examined DNA from the blood of 186 people with Chronic Fatigue Syndrome for XMRV and a closely related virus, but found neither.

"If there was one copy of the virus in those samples, we would have detected it," McClure said.

But McClure and her team did not duplicate the scientific techniques used by the Whittemore-Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic, Judy Mikovits, a lead researcher at the institute, said Tuesday.

"You can't claim to replicate a study if you don't do a single thing that we did in our study," she said. "They skewed their experimental design in order to not find XMRV in the blood."

The Whittemore-Peterson Institute issued a statement saying the British study was published after only three days of review as opposed to the institute study that underwent six months of vigorous peer review plus confirmation by three independent laboratories before it was published in Science magazine.

The statement also cited different techniques used in the British study that make its conclusions meaningless, including the use of a molecular plasmid control in water instead of a positive blood sample.

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

She said the Whittemore-Peterson Institute has been flooded with calls from patients with Chronic Fatigue Syndrome discouraged by the conclusions made by McClure and her team.

"They want to know if we are going to give up because a few people are attacking us, but no, we are not going to give up," Mikovits said. "We are still trying to develop drugs to treat Chronic Fatigue Syndrome. That was our goal, and nothing has changed."

The Whittemore-Peterson Institute continues to form new collaborations with researchers who are trying to replicate its study, said Annette Whittemore, president and founder of the institute.

"Our goal has always been to translate our research into diagnostics and therapeutics for patients," she said. "We think XMRV is, at the very least, a biomarker for a subset of patients with Chronic Fatigue Syndrome."