Cort Johnson interviews Tom Kindlon (Introduction)

February 17, 2013

Introduced and edited by Stukindawski

TomKindlonPhoto2

Irish ME/CFS Association Officer & Peer-Review Published Author, Tom Kindlon

Last year, prior to Peter White’s PACE Trial ‘recovery’ paper, Cort Johnson conducted an extensive interview with Tom Kindlon on the subject of CBT. The interview is in three parts and can be accessed by clicking the following links:-

[Part One][Part Two][Part Three]

On the topic of definition, Cort and Tom discuss what CBT has come to represent in the field of ME/CFS: whether and how pacing, sleep hygiene and graded exercise are combined into this treatment. The definition of pacing itself is also considered, since what it actually represents differs greatly among researchers and patients alike.

On the efficacy of CBT, when does it produce a positive result, and how reliable is the report? Do subjective measurements allow for an influence-free, reliable source of data? Tom draws attention to research which concludes with far less favourable results than more highly publicised studies. His own work also highlights the startling deficit in the reporting of harms associated with CBT (particularly in combination with GET). In the absence of solid harms reporting, the wealth of data in this regard comes from patient surveys.

 

Tables1.4

Tom collected data for his paper from 9 surveys organised by 10 patient organisations in 4 countries. 3 of the surveys, including this one, were from non-English language surveys (Norwegian and Dutch(x2))

 

 On the reasons for the application of CBT to ME/CFS, Tom explains how the treatment is devised on the basis of a “fear avoidance” model where fear and avoidance of activity perpetuate a ‘reversible’ condition. Yet Tom refers us to data that demonstrates an abnormal physiological response to exercise. Repeat VO2 max testing returned diminishing scores in a pattern unique to ME/CFS, contrasting it with other forms of chronic illness. Studies which highlight changes in gene expression and cytokine storms following exercise are also noted. Ultimately this raises the question: should a treatment based on a contentious assumption of aetiology, supported only by mixed and subjective results, really be deployed to ME/CFS patients en masse?

 On the media coverage of the PACE trial, Tom takes a critical look at the positive reports featured in the press. He points out that a lot of the media interviews had taken place before a wider audience was given a chance to read and critique the content of the paper. When the channels to critique the paper were finally opened, the restrictions placed on their form in order that they be considered for publication also prohibited the ability to produce a substantial reply. Tom’s insights into this media coverage raise important questions such as: does the impact of this research rely on Science or PR?

This substantial interview also covers a great deal more and includes extensive references to support the points that are made. I believe it to be a read well worth the time and energy and it should prove a great resource for patients and advocates alike. In my opinion, Tom Kindlon has cemented himself as a vital advocate for patients worldwide and provides a unique and studious counterpoint to some very contentious and questionable ME/CFS research. He stands as an example of the importance of patients being able to address the research community on an academic level in a succinct, respectful and thought provoking manner.

Tom (@TomKindlon on Twitter) has been helping to run the Irish ME/CFS Association as a volunteer for the last 17 years. His activities there have included editing the newsletter, dealing with enquiries, fund-raising and awareness-raising. Frustrated at the slow progress of research, for the last eight years he has taken a greater interest in reading many of the full research papers that have been published in the field. Now a regular commenter on research, 13 of his letters have been published in peer-reviewed journals on the subject of ME/CFS (not including one on so-called medically unexplained symptoms) along with something in the region of one hundred e-letters. His biggest contribution to the field was his paper “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” which was published in an open access journal and can be read for free.

For further information on his publications, see:
https://www.researchgate.net/profile/Tom_Kindlon2/

[Click Here To Continue To Part One Of The Interview]

 

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8 comments

{ 8 comments… read them below or add one }

Marco February 18, 2013 at 3:50 am

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.

Valentijn February 18, 2013 at 5:04 am

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.

Stukindawski February 18, 2013 at 7:10 am


Marco

Well done Tom, Cort, Stukindawski and Biophile (and other contributors).

Presumably this was a 'written' interview otherwise Tom appears to be able to 'talk the hind leg off the proverbial donkey'.

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.

Tom Kindlon February 18, 2013 at 2:12 pm


Marco

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.

Thanks Marco. You make some good points. Interesting idea about investigating floor/ceiling effects.

Esther12 February 18, 2013 at 5:11 pm

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.

Tom Kindlon May 29, 2013 at 1:11 pm

(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 May 29, 2013 at 1:17 pm


Tom Kindlon

(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)

Wat leuk!

Esther12 May 29, 2013 at 4:46 pm

Thanks Tom.

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