Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 17, 2013.
View the Post on the Blog
View the Post on the Blog
Well done Tom, Cort, Stukindawski and Biophile (and other contributors).
Good to see this all inaccessible format in one place.
Presumably this was a 'written' interview otherwise Tom appears to be able to 'talk the hind leg off the proverbial donkey'.
Re evidence of 'harms'. Its a pity the patient surveys can be easily dismissed and while the exercise studies are suggestive in this context it can be easily argued that we are discussing 'apples and pears'.
While subjective measures have their weaknesses it would add considerable 'construct validity' to evidence of harm if the exercise studies also collected subjective measures (preferably using the standard instruments used in the CBT/GET trials) and could correlate the various physiological measures with self-reported symptoms.
Might even highlight floor and ceiling effects if there are strong correlations between self-report and physiological measures with physiological measures continuing to change after ceiling or floor thresholds are reached.
One caveat being that the subjective self-reported 'improvements' in CBT/GET studies can't reliably be separated from the intended goal of the 'therapies' which essentially boils down to minimising the reporting of symptoms. A circular logic that is impossible to prove/disprove.
Thanks again and thanks to Stukindawski for the transcription/editing.
A timely article, giving the continued failure of PACE to release deterioration details (or proper "recovery" details for that matter). While harm surveys are going to be discounted somewhat, it's great to see them integrated into published papers - we have something to cite now, and when someone says GET is safe, we have scientific grounds to demand that they prove it in a manner that takes those surveys into account.
I boldly made that assumption myself. Hopefully this wont engender any hat eating on my part
I'll make sure and edit that in later so it's clear.
Thanks Marco. You make some good points. Interesting idea about investigating floor/ceiling effects.
That's a lengthy read! I think it does a good job of summarising a lot of complicated issues in a way that is understandable to people with little experience reading research though. Also, good to have something like this up on PR to refer people to, both patients and those who want to see why so many patients have concerns about the way CBT and GET are commonly promoted for CFS.
(In het Nederlands)
"Cort Johnson interviewt Tom Kindlon"
(327 words in Dutch on the interview)
The ME Association survey 2015 is a good source of both quantitative and qualitative data on the issue.
I'm posting some extracts to this thread.
Here's one on GET:
Here's one on CBT:
I just started a new Facebook page:
"Tom Kindlon's ME CFS & related page: News, Research and more"
Please "like it" to get some updates.
You can also try a Google Site Search
Separate names with a comma.