From The Independent ‘Commentators' section, 3 June 2011 (story by Steve Connor, science editor).
Science is a messy business. We like to think that it can give us clear-cut answers to difficult questions, but like any human endeavour it can frequently lead us up the wrong path. This week two scientific reports were published that more or less end a long-running dispute over whether an obscure mouse virus was the cause of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or ME. These studies are the latest to suggest that it is not after all caused by a mouse retrovirus with the confusing name of murine leukaemia virus-related virus (XMRV).
The story of XMRV goes back many years but most people would have heard about it first in late 2009 when scientists led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada claimed in a study published in the journal Science to have found it in the blood of 67 per cent of patients with CFS. It was strong evidence, but not proof, that she had found the cause of the mysterious condition that leaves people chronically tired.
Up to then I had never heard of XMRV, but realised these findings were of huge potential significance. If true, and it was being published in a highly prestigious journal, then this could answer one of the most vexing questions in medical science: what is behind CFS, which affects about 250,000 people in Britain alone and has never had a satisfactory explanation?
While writing up this report I remember the profound scepticism of some experts in this country who just didn't believe the link had been shown. So trying to get the balance right between this disbelief and the excitement of the findings was never going to be easy, or indeed satisfactory for both the scientists and the patients.
Soon after that initial report, further studies in Britain failed to establish a link. Professor Myra McClure, a distinguished virologist at Imperial College London, even suggested that Science had been premature in publishing the study. Half a dozen other groups also failed to replicate the findings and now a seminal piece of work by Tobias Paprotka and colleagues at the US National Cancer Institute has revealed that the XMRV allegedly found in the blood of patients with CFS was not actually there at all but present as a laboratory contamination in the animal cells, or reagents, used to test their blood.
In a remarkable piece of detective work, Paprotka discovered through genetic sequencing that the XMRV virus is a “hybrid” of two mouse leukaemia viruses that infected the same mouse cells used to grow human prostate tumour cells. This hybrid then infected a cell line known as 22Rv1 widely used as a laboratory reagent. Dr Mikovits and her team appear to be the unwitting victims of a universal problem for virologists. These modern-day sleuths use such sensitive techniques for detecting new viruses that they can often be misled by contaminants that get into their reagents.
In December, Professor Greg Towers of University College London showed in another study questioning XMRV that it was highly improbable for the virus to be the cause of the illness precisely because it appears to be a laboratory contamination. No one has so far provided convincing evidence to the contrary, which is why Science has taken the unusual step of asking Dr Mikovits to retract her paper.
She is reported to have said that this is “premature”. In the meantime, Science has published an “editorial expression of concern”, which amounts to a hazard warning to any others working in the field. A full retraction of the paper is surely not far away, and will probably come after a further study by the US National Institutes of Health, which is expected later this year.
This is all of little comfort to those with CFS. The XMRV affair looks like it was a wild goose chase. But, as one fictional sleuth is prone to say, by eliminating the impossible we can eventually arrive at the truth.
‘ But, as one fictional sleuth is prone to say, by eliminating the impossible we can eventually arrive at the truth.’
Yeah well, lets’ flippin hope so eh? Dogs with bones over ‘XMRV’ now lets get stuck in to something else with as much vigour… Oh and resource… 🙂
Two flawed papers do not have any impact on any of the positive paper on prostate cancer or ME. Hence why all these people bleating about it being over are still studing the virus in humans.
Unfortunately the virus is a human one and is probably causing ME/CFS, acute prostate cancer and several other well known cancers and neuroimmune diseases. It’s not helpful for these people to be dragging this out whilst more become infected. The power stuggle needs to end and serious science must be funded. The entire human species is at risk if we choose to ignore this human retrovirus.
Beneath that article on the Independent website are some excellent comments, including this one, which i hope Bullybeef will forgive me reposting:
So the when healthy partners and children are given ARVs to protect them from their HIV infected parent/partner, that is OK? So these drugs are fine for healthy people, but not for people whom are sick, and are carrying a new human retrovirus?
To suggest it is fine that a dying, invalid, debilitated ME patient has to carry on with absolutely no treatment whatsoever is a disgrace? We want our lives back and the lack of research into ME (which has a recorded history stretching back several decades, if not more) prevents any relevant, proven treatment for patients. The UK government are trying to get people back into work – I would go to work tomorrow if I was able – but whom would employ someone whom is chronically sick, and whom isn’t receiving any treatment to enable that person to re-enter society?
I am afraid you echo the same remarks that were targeted to the homosexually community during the discovery of HIV, and the denialism that originally surrounding it’s discover. From 1981 when HIV was first discovered, it took 6 years before HIV/AIDS advertising campaigns were on TV. Even a contamination theory then stalled the announcement of HIV. So if these researchers are simply choosing to ignore historic crimes of the past, and repeat them again, making the crime even worse. So yes, your comments are insensitive, but this is because society has encouraged your ignorance. You don’t understand, because you aren’t supposed to. That’s the point.
I always say, would you prefer to be happy or right?
If ME slumps back into gutter were it has been since the 1980s during the arrival of the psychiatric brigade, I am afraid a present and future epidemic of immense proportions awaits our next generations. Would you be happy then?
Does it have to take one of your loved ones to be struck down before you understand? Because by then, you become one of us, and it is too late. No one will listen. Would you be happy then?
My two simply questions to the naysayer’s are these:
Why hasn’t one negative XMRV study chosen to replicate the Lombardi or Lo papers? They haven’t failed to replicate; the Lombardi methodology has been released widely on the internet for nearly two years, there’s no secret to it. I have the method comparison table at hand if Mr. Conner so wishes to see it.
Why are we being “advised” to avoid using ARVs that inhibit XMRV in vivo?
I ask, if these people are so sure that a XMRV+ ME patient isn’t infected with a pathogen, would you take a blood transfusion from them? I am sure many patients would be queuing up to prove the fact beyond any doubt.
We know that the answer to these question would lay claim that people with ME are carrying a infection pathogen, and most likely, the putative ME agent.
Unfortunately this whole episode hasn’t been a scientific process at all. It has been 20 months since the Lombardi paper. The fact the majority of studies have chosen not to follow their methods, proves they have been driven to disprove the associated. That would mean that every researcher involved in the negative studies has a conflict of interests, and if that is the case, their studies shouldn’t have even passed the peer review.
But if the peer reviewers are also party to other negative studies, then the reviewers also have a conflicts of interests and are manipulating the movement of science and misinformation.
I don’t think it would be too difficult for the likes of the Independent to research whom passed these negative papers for review. I’d hasten to guess Drs. Stoye and/or Coffin would certainly be in there, the same retrovirologists that original peer reviewed the Lombardi study, and passed that. Obviously they later realised that they wasn‘t supposed to confirm that a new human retrovirus, potentially infecting around 7% of the donor population, and not mention a disease that people didn‘t even think was real. So they have clearly fought tooth and nail to repair the damage.
The Wall Street Journal only recently interviewed the editor of the PNAS journal, the same editor that published the Alter/Lo MLV (XMRV variants) positive paper. He has stated he had since had many researchers trying to publish negative XMRV/MLV papers, and yet he refused them all because, and I quote“we declined to publish all of them because they are not substantial additions to the literature, just more of the same,” says Schekman
http://blogs.wsj.com/health/20…
So there you have it, an editor with conviction and integrity, something lacking from many editors these days, in a world were the press are no longer free, and only tow the party line.
How many other pathogens are hidden away, infecting people, and causing disease that we are unaware of? Because it there’s one, there’s many more.
If this continues, god help our kids.