When that paper came out I was totally surprised and suspicious, Levy said...
This has long seemed to be crucial to me. Wessely, Vernon, and many many other ME/CFS researchers immediately did not believe the paper, and never have, though few of them have explicitly stated this publicly. Many people did not believe this for two basic reasons (putting aside, for now, those people who did not and do not believe that ME/CFS is even a real illness). First, they did not and do not believe, for various reasons, that ME/CFS has a viral cause. They believe it is caused by a multitude of factors, that it's a kind of breakdown of the neuro-immune system that can be provoked by many things, and not an infectious disease. They think there is no evidence that ME/CFS is an infectious disease - though I myself think the evidence that it is
not is slim to non-existent. Second, they did not and do not believe that ME/CFS cohorts represent a single condition - there are subsets, and they believe there are many different conditions jumbled up together.
This reasoning - that a retroviral explanation did not make sense according to the models that many people have of ME/CFS - explains much of the opposition the WPI have faced.
However, a few things strike me about this situation:
- Seek and ye shall find. And if you are convinced that something is
not there, that
has to affect the lengths you will go to in order to verify whether it is there or not. And nobody has yet replicated the WPI's methods.
- It's entirely possible for everyone with ME/CFS to be infected with XMRV even if the above premises are true. There has seemed to me to be a consistent lack of imagination from many people who have advanced arguments against XMRV that are not logically justified; many possible scenarios have been overlooked. There are many ways that XMRV in ME/CFS could be correct, despite the above observations. But some of those scenarios are unthinkable to many...
- Above all that though: How can it be that so many top researchers confidently believe they know what ME/CFS definitely is not, when there appears to be no accepted consensus as to what it
is? How can so much be known about something about which nothing is officially known? And even more: How can it be acceptable that
any consistent finding about ME/CFS
must be wrong because we know that ME/CFS is probably a jumble of mixed-up conditions? This means that research into ME/CFS must therefore all be doomed to failure - and indeed that's reasonably likely to be true, it's pretty likely there are indeed subsets, and separate but similar conditions...but to allow research to continue for decades into something you don't believe even exists as a discrete entity, while at the same time research continues to pretend that it is, and researchers continue to research on the basis that it is...and therefore dismiss any clear findings about it because they must be false because the whole thing doesn't really exist as a consistent entity...that is an unconscionable Catch-22, because it allows for no possibility of any progress ever being made.
Anyway, it has always seemed crucial to the whole dynamic that the majority of the interested scientific community immediately took the view that "this can't possibly be right", not for any reasons to do with the WPI, but because it didn't fit their existing beliefs and theories...and it recently also seems crucial to me that while many researchers believe this, few have dared to say so, and meanwhile a great many patients
do continue to believe that retroviral infection fits their experience extremely well and makes a lot of sense