Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Because the "scientists" doing these studies are not the real deal. Proof their hypotheses are right, and the kudos that goes with that, is far more important to them than seeking scientific truths and thereby striving towards what is best for patients and science. It should be incredible that this is the real situation, but sadly it is all too credible.

 

Yea and the design of the system means that academics need to publish so many papers/get so many points --- so I guess gaming the system [EDIT i.e. publishing poor quality studies with subjective outcome indicators] is incentivised!

 

I agree. Miranda is a Cochrane loyalist. So was not open to many of my more challenging ideas and opinions.

 

Yes, this is absolutely true

 

I remember David Tovey responded to my complaint that relying on subjective outcomes in unblindable trials (and reviews of those trials) was "terrible methodology" as "simply an opinion". I sincerely hope that members of the IAG will recognise that it is terrible methodology to rely on self-reported outcomes when interventions are specifically designed to manipulate how you think and behave - for example how positively you fill in a questionnaire about your private experience.

https://healthycontrol.org/2019/01/...iew-of-exercise-for-chronic-fatigue-syndrome/.

[NB I have a new blog address - healthycontrol.org. All the blogs on it have been transferred from the old one https://healthycontrolblog.wordpress.com/]

 

Tovey's response here seems to reflect this common idea that since ME/CFS is diagnosed based on subjective criteria (it's a "private experience"), that means subjective outcomes are the most appropriate outcomes to rely on. Never mind that you can't equate fatigue with anxiety and pain, as fatigue is almost defined by the limiting impact it has on function and activity, it's generally very bad logic in itself.

Nothing actually directly measures the patient's "private experience", so you want to come up with the best measure for that. Given the key nature of ME/CFS as a function and activity limiting condition, and the difficulty with actually measuring something like "fatigue", even if you only cared about that "private experience" the best measure would still be objective measures of that person's level of function.

I hope the IAG will not let such high school philosophy level logic go unchecked.

 

Especially in how it's always presented: "fatigue was reduced". No, it wasn't even measured, without a baseline and using a non-linear grading of relative meaning framed ambiguously in such a way that the participant is usually not answering the question the same way it is meant by the researcher, an ambiguity that is deliberate and exploited.

At best a proxy rating that is argued to represent "fatigue", whatever is meant here changes a lot, was altered after deliberate attempts to make participants alter it in a specific direction. To say that "fatigue was reduced" is simply invalid, it is not something that can be measured and it is not something that those questionnaires produce a reliable proxy for. Literally the opposite, as their definitions of the illness have little to do with reality.

The "validity" of those questionnaires was not established in a reliable way, their own arbitrary definitions and thresholds are gauged on one another. This is meant to be a similar process to say, the cosmic ladder, which measures distances to various astronomical objects by building measures on themselves, first close ones, then farther ones relative to the close ones. Except here there is not a single measurement, it's guesstimates compared to other guesstimates. Using finger-widths, not a sextant. Whose fingers? Doesn't matter, the numbers don't mean anything anyway.

If the field of EBM were any serious, it would care dearly about how this is just as invalid as rating temperature based not on a thermometer but on uncalibrated 1-11 dials of a stove.

 

This is one of the building block of the problems with outcome measurements.

Validity of questionnaires

The way results of questionnaires are interpreted as @Adrian said above

Objective measurements, lack of pre and post long term follow ups.as @Hutan mentioned - plus of course just which lart of the patient population are participating. I would suggest 3 months isn't nearly long enough especially if it happens to coincide with someone's best or worst season.

Plus entry criteria in the first place.

 

There is an interesting side story about the SF36-well, I find it interesting anyway. At the Illness Behaviour Conference in 1985, at which Cott introduced the McMaster BPS model to the world, a paper was delivered by Dr J Ware of the Rand Corporation. It appears that he was at that time responsible for development of the SF36. No reason is given for that paper not being reproduced in the book of the proceedings.

There was also a paper by Dr A Detsky, a health economist with interest in cost/benefit analysis. That also failed to make it into the book.

The reasons may, of course, be entirely innocent.

 

I did wonder about that and had a quick look at his other publications from about that time, but could see nothing obvious. It is a pity. One would have expected his paper to be tailored in some way to the circumstances and the audience, and should have been informative.

 

Or at least rebrand the crap you're delivering i.e. if the old stuff has been found not to work!

 

Until it's retracted, single-minded ideologues will keep pushing it and misleading people. Even though he says this is about LC he thinks he is making a point here, and keeps somehow insisting that any of those trials considered PEM, which he knows nothing about, and none of those trials even account for it.

Try and follow this discussion, if you can find any point other than just pushing his beliefs, he just can't accept that he is out of his depth here, especially as he is talking here to people who, unlike him, understand what PEM is, he is just using it as a substitute for fatigue.

https://twitter.com/user/status/1413576862555688965