Cognitive behaviour therapy and objective assessments in chronic fatigue syndrome

[AndyPR]

Why hanging, why would outside medicine criticism be confidential?

Well, one possibility is that Dr Edwards might have been told about it in confidence, or another is that he feels that it should be treated that way.

 

[Alvin2]

Well, one possibility is that Dr Edwards might have been told about it in confidence, or another is that he feels that it should be treated that way.

I am hoping he can elaborate slightly

 

[Jonathan Edwards]

Why hanging, why would outside medicine criticism be confidential?

There is something known in the big wide world as protecting your sources.

 

[Alvin2]

There is something known in the big wide world as protecting your sources.

Very true

 

[Graham]

Alvin2: you are right about us needing some real progress in biomedical research. I'm not able to do that, other than help with money. I am able to produce something that refutes the psychosomatic assertions, and that may, just may, start to influence decent state funding for proper research. Although we patients have funded a lot of research, large-scale state-funded research needs to develop any leads. At the moment, virtually all the tiny amount of state funding goes into psychosocial stuff. We need to change that atmosphere.

You could say that we need to influence the politicians, but they only turn to official sources of information. So we do need to create a reasonably solid block of accredited information that people can refer to.

It can be done. Things are changing in the US: it's just that here in the UK the old boy network is hard to break.

 

[Sean]

Excellent piece, Graham.

Good that you mentioned the long term follow up. The PACE authors might not regard it as the primary endpoint, but long term benefit is main game in dealing with chronic conditions, and their therapies showed no long term benefit at all.

Sharpe M, Goldsmith KA, Johnson AL, et al.
Rehabilitative treatments for chronic fatigue syndrome: Long-term follow-up from the PACE trial.
The Lancet Psychiatry 2: 1067–1074.

https://www.ncbi.nlm.nih.gov/pubmed/26521770

 

[TiredSam]

An author called Graham McPhee
Found an unexplained disparitee
'tween the PACE authors' pleasures
In subjective measures
And the best way to test CBT

 

[Graham]

The patients said they had improved
In ways that they felt and they moved
But sadly to say
It was not that way
Real measures showed that was disproved

 

[Graham]

Here is a link to the video which introduces my article:
https://www.youtube.com/watch?v=bPxhzMtKDnQ

The whole suite of articles about the PACE trial etc. is here:
http://journals.sagepub.com/toc/hpq/current
although you will have had the reference to the JoHP booklet and comments elsewhere.

All of the articles are open-access, apart from mine. I don't know why mine is behind the others.

 

[Dolphin]

Personally i think its a waste of money to research if CBT will improve ME/CFS, its in the same category of will CBT improve allergies or arthritis or hypothyroidism [facepalm]

For anyone who doesn't know, Action for ME wrote a letter supporting the researchers' application for funding in the early 2000's.

 

[Tom Kindlon]

I find this apparent, consistent and unexplained disparity between subjective and objective outcomes unsatisfactory and can only come to one conclusion: a correct interpretation of the results lies between two possibilities – improvements in subjective scores on fatigue and physical conditioning do not reflect any real improvement in either, but simply reflect a re-scaling exercise by patients as a result of exhortations by the therapists, or there were improvements in fatigue and physical functioning, but these were too small to show up in any objective assessment. I would argue that continuing to rely on subjective measures is potentially misleading and is rather like using different sets of elastic tape-measures at a Weight-Watchers’ meeting. It is vital that some consistent means of obtaining objective data is agreed.

https://twitter.com/i/web/status/899273516410966016

https://twitter.com/i/web/status/899274623157665792