On Science and Trust
Trust and belief are two things that don't belong in science. Science is about data, reason, enquiry, transparency, communication and scepticism. Trust and belief are emotional states.
Too often the scientists on one side or the other are painted as good or bad, when for the most part they just represent thesis and antithesis.
I trust the motivation of the WPI given what is at stake and their personal commitment. I do not trust their science, believe in their science, or anything similar. I look at the facts.
Who is getting the facts? The pro-HGRV thesis researchers, and the anti-HGRV researchers. All of them. In time we will have enough information that reason and data will give us a highly probable answer.
Now the biopsychosocial research, as opposed to the virology, is something else entirely, although some of the issues are the same.
In the virology they have repeatedly found that XMRV is not present in samples, and so have concluded that it probably is not present. In presentation to the media however I often read statements like it is NOT present, it is ALL contamination, as though these were certainty. The reasoning is: It might be so, therefore it is. Really? It might be true that ME is caused by aliens, so therefore it is? Do we really want to use this kind of argument?
In the case of sensationalist media I think they really do want to use this kind of argument. Its tabloid press dominating the field, and occasionally responsible media organizations just cut and paste the tabloid nonsense without checking the facts. Its right up there with "An alien fathered my baby."
The biopsychosocial movement has this issue in spades. CBT/GET is the only effective treatment for example. Really, what about antivirals with success rates that are an order of magnitude better? What about all the studies using objective outcomes that show it does not work at all? How can they claim that it is the only effective treatment when the percentage of patients who respond is very low, with a very small response, even in the most optimal studies? Yet the media presentation is mosty about success, the only effective treatment, when it isn't about patients "resisting" treatment or similar spin.
Let us not forget that the entire psychosomatic issue is just a long standing hypthesis. It has NEVER been proved. Otherwise claims that MS, diabetes, rheumatoid arthritics etcetera are all psychiatric would still be valid - of course they can argue that they got it wrong for those diseases, but are right for the others. This however still rests on the same illogical claim: if we don't know what causes a disease the cause must be psychosomatic. This is such an open ended claim that, in principle, it is unscientific because it untestable. Or to use a term I have come to like recently: non-science. It has however been dis-proved, many times, but it can only be disproved to specific illnesses - like MS. It is impossible to disprove the entire thesis as it is not really a scientific claim - it is not testable and refutable in the accepted sense.
When scientists present papers they are very careful. When scientists present personal opinion to the media, either the scientists are sometimes making outragious claims, or the media is cherry picking or distorting the quotes by leaving out context. This doesn't always happen but it is quite common in ME and CFS research.
Bye
Alex
