Science Live, the weekly chat at Science magazine, will tackle XMRV and chronic fatigue syndrome on Thursday, 22 September. From the Science Live webpage:
Two years ago, Science published a paper suggesting that a mouse retrovirus called XMRV might be involved in chronic fatigue syndrome (CFS), a debilitating disease with no known cause. The study raised worries that XMRV might be spreading via blood donations. Since then, many other studies have failed to find XMRV in CFS patients, and some have suggested that the 2009 paper was the result of lab contamination.
Michael Busch, a transfusion medicine scientist involved in XMRV research, and retrovirologist Jay Levy will be in the chat to answer questions.
Thanks!
Quotes from 2010/2011 on XMRV….
Dr Jonathan Stoye: “It should be made as definitive as possible that XMRV is not linked to chronic fatigue syndrome. It is a myth.”
Professor Greg Towers “Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome.”
Dr Ila Singh “We are now convinced that there is no XMRV in CFS patients.”
Dr. Stewart Le Grice “XMRV has never been in patients.”
Professor Myra McClure “We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK.”
Dr John Coffin “I wouldn’t worry about XMRV.”
(References)
http://wellcometrust.wordpress.com/2010/12/20/chronic-fatigue-syndrome-is-not-caused-by-xmrv/
http://www.youtube.com/watch?v=XwG0XlcMgx8
http://articles.boston.com/2011-07-18/lifestyle/29787671_1_xmrv-chronic-fatigue-virus/2
http://www.bbc.co.uk/news/health-13604050
http://www.cfscentral.com/2011/05/dr-ila-singh-we-are-now-convinced-that.html
http://news.bbc.co.uk/1/hi/health/8441491.stm
http://www.twiv.tv/2011/06/05/twiv-136-exit-xmrv/
I can’t do the live chat tomorrow, but I’d be interested to hear what Michael and or Jay see as lesson we should take away from the XMRV folly (maybe folly is not the right word, but I’m not sure what else to call it). Contamination can happen in any lab, so how might we avoid this in the future? Is this just something that should be expected, given that researchers simply aren’t perfect?
I can’t do the live chat tomorrow, but I’d be interested to hear what Michael and or Jay see as lesson we should take away from the XMRV folly (maybe folly is not the right word, but I’m not sure what else to call it). Contamination can happen in any lab, so how might we avoid this in the future? Is this just something that should be expected, given that researchers simply aren’t perfect?
Sciene Now has chosen Jay Levy as someine to speak, is to say the least, “interestng”. If the Phase 3 study comes out negative, he will say “I told you so”, and so many others like Coffin Stoye and McClure. Why not asking Dr Ruscetti to speak ? Dr Alter, Dr Lo, or gasp, Dr Mikovits?
Science is so polarized at the moment, and patients are so sick with a disease that most scientists have never heard of, let alone they have never talked to a patient.
I would like to add, not only science is polarized, but there are interests out there that want to force or keep ME/CFS in the domain of psychiatry, or complex somatic disorders. This is a travesty, as proper biologic research has never really happened seriously.
Personally, I would rather have a retrovirus, call it HIV, XMRV or other gamma retroviruses, or cancer, even knowing it would be fatal. Those who don’t have ME/CFS cannot even grasp what patients have been through for decades, but it is still happening in 2011.
As much as cancer patients are survivors the day they get their diagnosis, MECFS patients are liars, malingerers or hell, extremists that send death threats to scientists.
I really hope that regardless of the results of that study, patients get the respect they deserve.
Regardless whether XMRV is involved or not- it is a sad day in America and the world when children are treated as mine was because he is too sick for intelligent scientists to locate the answer http://www.bringingryanhome.com
Pray for an answer and scientists to come together to achieve it
People living with ME/CFS have been fighting to be heard for over 30 years. Whatever the cause, patients need support and help for there symptoms.
There is no place for psychiatry in our illness.
ME / CFS is a very real and devastating disease. Sufferers who are severely affected experience seizures, paralysis, muscle spasms, inability to tolerate light, sound, touch and movement.
People have to start changing the way they look at this illness, if everyone works together to help spread the word, then maybe oneday ME/CFS will be better understood.
Kate.
“Alone we can do so little; together we can do so much.” – Helen Keller
People living with ME/CFS have been fighting to be heard for over 30 years. Whatever the cause, patients need support and help for there symptoms.
There is no place for psychiatry in our illness.
ME / CFS is a very real and devastating disease. Sufferers who are severely affected experience seizures, paralysis, muscle spasms, inability to tolerate light, sound, touch and movement.
People have to start changing the way they look at this illness, if everyone works together to help spread the word, then maybe oneday ME/CFS will be better understood.
Kate.
“Alone we can do so little; together we can do so much.” – Helen Keller
Â
“There is no place for psychiatry in our illness.”
That’s a very closed-minded perspective. Patients with cancer, heart disease, HIV, diabetes, or any other chronic condition usually see psychiatry as an important part of their overall care. The brain is part of the body, you know.
 Alan Dove said: “There is no place for psychiatry in our illness.”
“That’s a very
closed-minded perspective. Patients with cancer, heart disease, HIV,
diabetes, or any other chronic condition usually see psychiatry as an
important part of their overall care. The brain is part of the body, you
know.”
————————–
Thankyou for your reply Doctor Dove, I’m very sorry if I what I said didn’t make sense.
what i mean is.. In our country (The UK) the illness ME/CFS is treated as a mental illness and this I believe is wrong.
In none of these diseases are patients, doctors and the public told that psychiatry is a TREATMENT for the disease, while being offered nothing to treat the biomedical symptoms and very little research into the physical cause(s). No HIV, cancer, diabetes or heart disease patient is told their illness is all in their heads or that some phantom experience in childhood caused it.
There is no need whatsoever to remind patients that others with disabling diseases can get help dealing with the devastating ruin of their lives through mental health support. In none of those other diseases has the public been propagandized to believe patients have nothing physical wrong with them. Despite evidence going back decades (Brain scans in the mid-1980s showing punctate lesions in “cfs” patients brains, similar to HIV patients’ brain scans is just one example) until recently the powers that be have ignored, buried or denigrated all the findings that might show what it really going on.
You, Alan Dove, were inferring as recently as a year ago that mental illness is a cause of the disease. I hope by now you’ve educated yourself and won’t be promoting that disservice to “cfs” patients anymore.
Professor Rancaniello, I hope you’ll do us all a favor and have some of the scientists who coauthored the new International Consensus Criteria on ME on your program.
Have to agree with XMRV Positive UK, Dr. Dove – in the UK we are offered no other therapy or care other than anti-depressants, CBT and GET. These interventions are inappropriate at best and in some situations downright dangerous. Yes, of course psychiatry has it’s place, but in the UK we are offered no other treatment. Would you agree that it would be inappropriate if an AIDS or cancer sufferer were only offered CBT but refused biomedical treatment? Well it’s also inappropriate for us. This is why so many patients are angry. They are desperately ill and need proper treatment and care not behaviour modification, sectioning and denial of treatment. Which is happening in the UK as we speak.
People die from ME/CFS, not directly (as is also the case with AIDS), but from complications that arise due to the illness, such as pneumonia, rare cancers, heart and organ failure. Day to day living is abominable: seizures, ataxia, myoclonus, tremulous, confusion, fainting – I could go on but I think you get the point. This is not some benign condition that makes people tired and to be frank I am tired of the silly psychiatric merry-go-round. Psychiatry has its limitations; it can’t cure a retrovirus, a virus or a bacterial infection – it can’t cure a neurological condition.
Let’s put our feet back on the ground and work to solve the disease. When proper focus is given to this illness, patients may stand a chance of recovery. I’ve lost 6 years of my life to a condition that stopped my career in its tracks, robbed me of my hopes of becoming a mother, and stole my health and my dreams. I was beautiful, happy, vibrant and ambitious. Now I spend my days lying in bed, unbathed, nauseous, dizzy, weak and confused. There are many who have lived with it for decades. Enough is enough.
This virus shows an apparent preference for human cell lines. In recent research this included Jurkat cells, immortalized human T-cells. This is all the more remarkable considering that the nude mice where the virus was said to originate lack T-cells. If the virus is not from human sources, isn’t this kind of preadaptation to cells outside its environment an anomaly? Aren’t there several other such anomalies in current research on XMRV?Â
Just for the record, Science did ask me to participate in the live chat, but my schedule doesn’t permit it. I would never say ‘I told you so’. A big problem in this story is that many scientists have been dismissing the XMRV-CFS connection before all the data were in. That’s one of the lessons to be learned from this – keep quiet until you have enough data to make a conclusion.
XMRV arose in nude mice injected with a human prostate tumor. The virus was selected for in those human cells, probably explaining why viral replication is stimulated by androgens. While not from human sources, XMRV clearly arose by selection in human cells in a mouse.
Given the harm that has been done to ‘CFS’ patients by inappropriately applied psychiatric therapies, I think it’s quite reasonable to be somewhat closed minded about it – at least until more stringent controls and regulations are put in place for psychiatry.
“A big problem in this story is that many scientists have been dismissing the XMRV-CFS connection before all the data were in.”
That’s a refreshingly honest observation. I wonder what you think of the number of studies that were published with a patient cohort that was not the same as the one in the original Science paper. And did you think it odd that the first negative study was submitted to PloS One seven weeks after the Science paper? Or that more than 100 samples sent to the UK that were intended to be tested in the Groom et al paper disappeared? Jonathan Stoye has never answered why, though the question was put to him. He said the question should be put to another co-author on that study, Jonathan Kerr. But Kerr is unreachable, absolutely incommunicado, even to those who were in frequent contact with him for years prior.
Then there’s the CDC study, undertaken on samples from their Empirical Criteria cohort, in which it was argued that the Canadian Consensus Criteria cohort used in the Science paper was suspect because some of the key features of the Canadian Consensus Criteria included neurological abnormalities that may be exclusionary for a CFS diagnosis. That’s in Switzer et al from July of last year. What’s interesting is that lymphadenopathy is included in that argument, while this is one of the eight symptoms from which four must be present for a CFS diagnosis according to the Fukuda criteria.
I well realize you are a virologist and not an ME/CFS expert. But it was sure interesting to see the dismissal you reference from people who clearly did not know anything about ME/CFS.
I am not arguing against this study; I am not a scientist. But I do find it quite curious that few have found these questions worthy of much consideration.
Dr. Dove, if this illness was psychiatric, why would patients not embrace antidepressants, CBT & exercise? Does it make any sense that they would not want to return to health?
Does psychiatry care when the results from psychiatric treatment bear little fruit? Is it even aware?
You might make a case that there might be a small percentage of patients that ’embrace the sick role’ or some such…but a million people, with countless loud voices stating loudly & specifically that this is not the case? With life experience that indicates that they are not the sort who would be prone to such horrible manifestations of somatization? Do you seriously believe that they are all that delusional? Or dishonest, even?
Especially when they do not respond to the treatments flogged in studies like PACE that did not study the patients that WPI and Harvey Alter chose to study?
Quite a few of these patients (though not all) were accomplished professionals who earned a good living. All of a sudden they turned, in many cases literally overnight, into psychiatric patients who prefer to do nothing and never leave their homes? Or the perception many (including physicians) hold of CFS patients: malingering, lazy hypochondriacs? When somebody looks at SSDI (for those who can even qualify) as a lifeline, albeit one that represents a small fraction of what one used to earn…why would they all of a sudden not want to return to some semblance of their former lives? Does it make any sense to you?
Beyond that, this disease has never been properly studied. Say what you want about WPI and the Science paper, they chose the right cohort, something that didn’t happen in any of the negative studies for well over a year (or just about ALL studies going back decades, save Incline Village/Lyndonville, and a precious few others). Studies always select mildly or moderately affected patients, never the more severe cases. Does that make any sense, either? Unless one takes the position that CFS only means the mild/moderate cases; what then of those suffering horribly? Is their CFS diagnosis inaccurate? What happens to them?
Many develop more serious illnesses–like heart disease or rare lymphomas. And once something like that is present? You don’t have CFS anymore. You knew that, right? That’s why, officially, people don’t die of “CFS.”
A patient advocate named Mary Schweitzer pointed out that AIDS is inclusive–it can represent a range of symptoms, and patients were not told they didn’t have AIDS if they suffered from a symptom not found in another patient. Exactly the opposite is done with CFS, so that many symptoms are not included by the CDC as they are not found in a consistent population among patients. If it’s beyond the 8 Fukuda symptoms it’s not a factor in “CFS.” And they’re even contradictory about symptoms potentially being exclusionary for a CFS diagnosis, a detail that nobody offering comment on XMRV seems particularly interested in. And it’s not like they recognize Myalgic Encephalomyelitis…they don’t. Do you know a new ME criteria has just recently been published? Does it matter to you? I’m asking both sincerely and politely, even though I don’t really expect answers.
Meanwhile, patients are always told that we must accept that psychiatry may be a factor–always, always, always. Fine. But given the range of physical symptoms, many of which I don’t believe are connected to any psychiatric linkage in the published literature, patients get to a point where hearing it becomes quite irritating: it is simply inappropriate.
Psychiatry in “chronic fatigue” is a far more reasonable proposition, but Myalgic Encephalomyelitis and Chronic Fatigue are two very different things. Patients suffer for the sake of this easy, lazy comparison and conflation. But many patients will be sure to keep our minds open, because psychiatry plays a role. In everything.
Even when it doesn’t.
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Get rid of Gluten in these people’s diets and sit back and watch them improve….Gluten has a lot to answer for in our western diet and I just wish you would pay more attention to it…….but no, heaven forbid, the drug companies would lose too much money if 3/4 of the population started feeling better and hundreds of ailments disappeared….
A so-called chat about this controversy, managed and led by Jay Levy, sounds like a trial in which the Prosecutor got to be the Judge. :
“The JUDGE agrees that MY methods of Assay, (which didn’t even try to duplicate WPI’s PCR methods), are perfectly adequate to ‘duplicate’ the study results. The Jury will not be allowed to hear any evidence regarding the possibility that my methods actually destroyed most of the XMRV-sourced compounds which WPI’s study found.
“We don’t know whether the differing results are a question of
(A) contaminated reagents; (B) faulty technique at one or both labs; or (C) significant destruction of the compounds to be measured by a stupidly designed experiment here. But, these uncertainties are of no importance in this Court: The Judge WILL NOT use the WPI procedure in a re-test, and WILL NOT call for financial support of WPI testing and analyzing of MY methods. The JUDGE finds Lombardi, et. al, guilty of “bad science”, and declares their reputations to be ruined.
“Without recourse! I get to be the Jury as well, and I ALSO get to deny all appeals to reason and common sense. This premature conclusion is FINAL.”
—–
This is a sad week for Science. The Podcast announces that “….one of the authors, Robert Silverman, of the original Science paper has retracted it said that is a contaminant.” But the Podcast DOESN’T mention that Silverman was alone, among the entire WPI team, in accepting the “offer” of retraction. Everyone else has refused to retract the paper.
All of this vicious politics leads me to ask a very hard question: Are the labs which originally allowed certain strains of XMRV to escape proper containment, and representatives of Blood Supply companies, leading the charge against WPI because THEY don’t want to be held responsible for spreading human-orinted strains of XMRV all over the landscape, and possibly creating higher incidence of CFS? AAAS, by refusing to even acknowledge the fact of every *OTHER* WPI researcher refusing to retract the Paper, isn’t looking good in this.
Whether we are a scientist studying  diseases or a patient- this story is important. We hear so much negative about CFS and I just want to share something here  because I think it is beautiful and will affect us all in some way. http://www.invisiblediseases.com/Dr_Dolan_Reports/Entries/2011/10/6_The_war_has_lost_a_soldier,_but_gained_an_angel.html
Please help us find the answers we need.