Go To Part Two
Commentary: What can we take from Skewed?
Skewed lists numerous failures in the scientific, medical and political processes involved in ME and CFS, particularly in the UK. While he makes a good case that something is very wrong, it is not conclusive with respect to motivations, nor can it be. Short of whistleblowers I do not foresee this kind of thing ever being proved. What he did show was an outline of a process I summarized earlier, though he did not summarize it this way: limit, deny, claim, lobby. We can argue forever about why, but what is happening is on much more solid ground.
What Does This Mean for ME and CFS?
I found myself writing this section as I was waking from sleep one morning.
My opinion is currently that the evidence is siding against the conspiracy hypotheses into ME and CFS, despite the arguments in Skewed. However, I also think the evidence is accumulating toward highly biased "scientific" practices that more resemble politics and unbalanced influence than objective science. It favours argument that is pursuasive rhetoric rather than data, analysis and reason. Its a victory of spin over substance.
What does this mean toward the proponents of the Dysfunctional Belief Model? I currently think that for the most part they believe what they are saying. They are so convinced that they are right that they are, consciously or unconsciously, using every rhetorical and psychological trick to reinforce their message.
A conspiracy theory takes a set of facts and shows its consistent with the theory. It is very hard to test. Solid evidence can really only be produced with mulitiple whistleblowers or a damning paper trail. Assigning motivation is even more problematic. Unlike a conspiracy theory, a failure of scientific rigour can be demonstrated to some extent by careful analysis. I prefer to look at outcomes and processes for this, its much less subjective than presuming motives.
Evidence of pursuasive rhetoric in defiance of the facts is however routinely available. I still think this is their Achille's Heel. It was the PACE study and press releases and commentaries related to this that clearly showed this to me for the first time.
Why run the FINE trial? Why run the PACE trial? Despite methodology that should maximize positive outcomes and minimize the risk of negative outcomes the results were underwhelming. Much is made of the statistical significance, but a statistically significant poor result is still a poor result in the final analysis.
One key feature from the PACE trial which advocacy has not hammered home nearly enough, is why actometers were dropped as objective measures part way through the trial, after other studies using them have shown that CBT/GET either does not improve functional performance, or worsens it. We should be making a lot more about this point, because the use of actometers as objective measures of performance was in the published study design for PACE.
While its looking increasingly unlikely that broad conspiracy theories have credibility, its looking much more likely that dubious methods are being used to promote certain views. Indeed, the discussion of Zombie Science in Skewed (though that phrase was not used) shows the problem was visible in 2003 or prior.
Next on my blogging agenda: another look at Zombie Science.
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Greenwashing Part Three
Blog entry posted by alex3619, Sep 10, 2012.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I become political around 2009. My current project is a book called "Embracing the Null Hypothesis". The hypothesis that is unsubstantiated is the idea that CFS is due to dysfunctional beliefs.