A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

Cort Johnson interviews Tom Kindlon (Introduction)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 17, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    651
    Likes:
    1,034
    View the Post on the Blog

    View the Post on the Blog
     
    WillowJ likes this.
  2. Marco

    Marco Grrrrrrr!

    Messages:
    2,180
    Likes:
    2,427
    Near Cognac, France
    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.
     
    Tom Kindlon and Jarod like this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    11,321
    Likes:
    26,673
    Amersfoort, Netherlands
    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.
     
    Tom Kindlon likes this.
  4. Stukindawski

    Stukindawski

    Messages:
    79
    Likes:
    160
    I boldly made that assumption myself. Hopefully this wont engender any hat eating on my part :D

    I'll make sure and edit that in later so it's clear.
     
  5. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    874
    Likes:
    4,011
    Thanks Marco. You make some good points. Interesting idea about investigating floor/ceiling effects.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    6,907
    Likes:
    16,603
    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.
     
    Valentijn and Tom Kindlon like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    874
    Likes:
    4,011
    (In het Nederlands)
    "Cort Johnson interviewt Tom Kindlon"
    (327 woorden)
    http://www.me-cvs-stichting.nl/nieuws/items/?newsId=2699

    (327 words in Dutch on the interview)
     
    Valentijn likes this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    11,321
    Likes:
    26,673
    Amersfoort, Netherlands
  9. Esther12

    Esther12 Senior Member

    Messages:
    6,907
    Likes:
    16,603
    Thanks Tom.
     
  10. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    874
    Likes:
    4,011
    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:

     
  11. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    874
    Likes:
    4,011
    Jennifer J, Sea, mango and 2 others like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    874
    Likes:
    4,011
    mango, Jennifer J and Comet like this.

See more popular forum discussions.

Share This Page