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Greenwashing Part Three

Blog entry posted by alex3619, Sep 10, 2012.

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.
Ren, WillowJ, merylg and 2 others like this.
alex3619

About the Author

I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.
  1. alex3619
    Hi Jarod, I am not saying conspiracies do not exist. I am saying they are very hard to prove, and while we are trying to do that we are not proving the things that can be proved.

    In addition we do not disagree on behaviour issues, though I characterize it as unbalanced influence - a point I wll be discussing in depth later. The checks and balances that should apply in responsible medicine or science have systemically failed. This is not quite the same as evil behaviour, but it would tend to attract those with this tendency, like a moth to the flame.

    Bye, Alex
  2. Jarod
    Regarding people behaving badly: They have done FMRI studies that demostrate this scientifically.

    Basically they show people violent pictures, and in real time, do an MRI to illustrate which areas of the brain get activated.

    Some people actually get aroused at the violent images.

    I think Dick Cheney, William Reeves, or Fiona Fox may be good candidates for this FMRI testing.
  3. Jarod
    Hey Alex.

    I'm a believer that conspiracies do exist, and respect your position as well.

    However, keep in mind that the hundreds of people don't necessarily have to be actively coordinating the conspiracy.

    All it really takes is a group of co-opted people who's bizarre goals are to simply undermine society. Basically screw with everybody(except their perceived allies) anyway they can.

    I think of it as evil behavior.

    Evil behavior which is opposite the way 98%+ of average people function, and therefore how most people have cognitive dissonance around the concept.