Sunday, January 24, 2010

Validation

Unlike many things in life, science is self correcting at every step of the publication process. Generally a researcher gets data and goes to some type of advisor and they discuss the interpretation of the result. That result can lead to a publication, which is then sent to a journal. The journal sends that out for independent review by experts. Those experts review the work, make suggestions, and often ask to see additional data. Only after the editor of the journal is satisfied does a worthy article get published. Other groups will then read the paper and if they disagree with the result they can write a letter (with data) to the journal or publish a paper with opposing results. Other groups will then weigh in and eventually the right result will become an accepted fact. Disagreements are commonplace and debates can go on for an entire scientific career.

Although many do not think it, scientists are people too. At some point in a career a decision has to be made and a topic or problem becomes your life’s work. So what happens when two groups of scientists disagree? Normally the debate is carried out in journals and meetings, and yes emotions can get the better of people. What happens when scientists get involved in an emotionally charged topic? The debate is taken up in journals, meetings, the media and in the public. That is exactly what has happened with the report XMRV was not detected in chronic fatigue syndrome (CFS) patients in England. I think people should get involved in scientific debate, however there is so much misinformation and arm chair scientists out there, true facts are hard to come by. Science moves much slower than the 24 hour news we have grown accustom to. I think Vincent Racaniello’s blog and Abbie Smith’s erv blog have done a good job of covering the developments and offer a good cross section of the internet debaters. Unfortunately, CFS suffers and their families will likely have to wait years for conclusive experiments to be done by a number of groups for there to be any scientific consensus about XMRV and CFS.

This debate reminds me of a personal problem I had. I found out that I have celiac disease last year. Although I do not know when this disease began, I believe that it went undiagnosed for a fair amount of time. I was asymptomatic and some other complications revealed it’s presence. I ran track and cross country in college and suffered from recurrent injuries, lack of energy, and repeated inconsistencies in my training. The result was little improvement in 4 years. Did my disease contribute to this? I would think it is likely, but I will never know for sure. Do I wish I found out earlier, yes. There were a number of times I felt like something was not right and talked to my coach and medical staff and they could never find anything wrong, which was frustrating. In a way the diagnosis was a moment of validation for me, I could point to something and say, hey maybe this was the problem all along. From reading comments on blogs from CFS patients it looks like they really want that ah-ha moment too. I would urge them not to jump too quickly onto XMRV being the cause of their ills. If the idea that gluten was the trigger of celiac disease symptoms was controversial, I could change my diet without significant impact on my life. If I found out gluten was not the trigger I would be pissed about not enjoying my favorite foods years, but at the end of the day I can live with that. If we rush too quickly into accepting XMRV causing CFS, patients may be prescribed harsh antiviral drugs that carry very unpleasant side effects. From what I read about CFS and the side effects of antiviral drugs, the combination of the two sounds unimaginably unpleasant. Although it is unfair, humans and science have different time scales, this is a case where scientists are working as hard as they can and the rest of us are going to have to wait.

2 comments:

  1. What you may be missing is the fact that CFIDS sufferers have been medically abused and/or ignored for over 30 years when science, had it not been politically manipulated, could have made great strides. You apparently are not aware of the politics behind the UK study, but people with ME/CFS are. The intense interest in XMRV by sufferers is not blind. We already know that this may not be the final answer. We are overjoyed that at last someone is actually trying to find answers instead of promoting their pet theory that all these biological abnormalities are somehow psychosomatic. There is a political/medical movement right now, especially in UK but also in the US, to psychologize a lot more illnesses than previously. They are trying to change the official diagnosis used by WHO and governments to decide on treatments, research and disability claims. As it stands in UK, the government has decided that ME is a psychiatric illness and they have set up "treatment centers", which offer only exercise and pyschological counciling, and ME sufferers who cannot or will not go to these centers can be forceably committed to mental institutions where they can be tied to a bed and have psych drugs, electroconvulsive "therapy" and other tortures forced upon them. Check out the story of Sophie Mirza who was killed by this practice. http://www.youtube.com/watch?v=0Y_T5ylWUv4
    People who are diagnosed with ME in UK are denied testing for any of their biological symptoms. An autopsy showed that Sophie had severe abnormalities of the spinal chord and nerves leading from it. There is plenty of research out there showing that the brains of PWCs have holes in them similar to Parkinsons and Alzheimers, but only the wealthy can afford to get tested, and there isn't much in the way of treatment when they do, other than an end to the contention that they are somatizing. It is already known and accepted that syphilis and Lyme disease affect the CNS and no one would suggest that exercise and psychological counciling would cure those diseases. Bottom line, any "research" with the name of Simon Wessely (UK) or Bill Reeves (US CDC) is going to be an attempt to disprove any physical cause of ME/CFS, and those of us who have been watching this for decades know this. Reeves' latest "research" effort purports to show that CFS sufferers are victims of child sexual abuse and "emotional neglect" and are just stressed about it!! (Previous studies have already disproven this theory.) As a student of virology, I would hope that you would see a red flag pop up when a study finds ZERO XMRV. UK ME sufferers have already tested positive for the virus and some of the cohort from the WPI study were from UK.

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  2. Oregano,

    Thank you, you are our blog's first reply. I know that ME/CFS diagnosis and treatment have had horrid histories. I am not disagreeing with you there. The point of my post was not to pick a side in the debate over the association of XMRV with any disease, it was a call for more research. I have read the Science paper showing the association and the PLOSone paper not detecting the virus. There could be many reasons for this discrepancy. I am aware of the histories of both groups and both are attached to a specific viewpoint, each probably a little too much. If they call themselves scientists I would doubt they would put their name on something that was falsified, it is scientific suicide. The techniques they use are "simple" so they would have known they would be found out very quickly. I do agree with you that more work needs to be with this disease. This debate will spur on new research, many well funded HIV/retrovirus labs have begun work on it. This is a hot topic, there is the chance someone can get high profile publications and putting ones self at the head of a new field. Importantly, scientists are people too and we do not often get the opportunity to do work that could immediately translate into the clinic, who would not want to help a group of suffering people? I would jump at the opportunity. We will get to the right answer, but it will take time, that is why I talked about science being self correcting. Until we know something for sure treating someone with an antivral drug like AZT (with undesirable side effects) is just as irresponsible as electroconvulsive therapy.
    -Kevin

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