Worth reading: Thinking Critically about ME research

[Keela Too]

Short read. Well said that man!

https://evanodell.com/blog/2017/10/03/thinking-critically-about-me-research/

"
The laziest kind of statistical research is that which relies solely on presenting the results of statistical tests, without making any meaningfull effort to critically interpret the results. Prima facie acceptance, without critical inquiry, leads to noise being misidentified as meaningful, to bad science and bad policy.

With that in mind, it is worth taking a look at an article by Crawley et al (2017) published on 20 September 2017 in Archives of Disease in Childhood , investigating the effectiveness of the Lightning Process for children with myalgic encephalitis (ME, also known as Chronic Fatigue Syndrome or CFS)."

continues at link.

 

[trishrhymes]

Good article, made more comprehensive and hard hitting by the addition of a comment by @Valentijn who spells out the inappropriateness of using questionnaires after a 'treatment' that involves brainwashing and magical thinking. Thanks to both.

Edit to add: I applaud blogs like this, but wonder whether anyone but the ME community will read them.

 

[Keela Too]

@Valentijn Maybe you could copy your comment here too?

And I agree @trishrhymes blogs have limits, but it's always worth pointing out a good one I think.

 

[Valentijn]

My comment:

Excellent article, thank you! One point I disagree on is that Crawley almost certainly did take the placebo effect into account - these treatments rely on it, and the outcome measurements used often deliberately exploit it. In both LP and illness-denial CBT, patients are told that they can make themselves better if they believe it. They are taught to ignore symptoms, and even to deny them to others. It is implied to varying degrees, if not stated outright, that a failure to recover is a failure of the patient.

After receiving this intensive brain-washing, the patient is then quizzed on whether or not they have the symptoms that they have been taught to deny if they really want to recover. Those patients trying their very best to make the miracle work, and those who want to please a nice therapist, will do their best to deny symptoms. Accordingly, the questionnaires used to evaluate the effectiveness of the treatments are grossly inappropriate.

But this is not an accident, and it goes far beyond a placebo effect. It is the deliberate psychological manipulation and exploitation of patients, in this case children. It is outrageous that people using such methods are allowed to see patients in their clinics, much less be funded to carry out glaringly unethical research upon them. The institutions enabling, financing, and promoting such practices have a great deal to answer for.