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ME/CFS patients’ reports of symptom changes following CBT, GET and pacing treatments: Analysis...

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Keith Geraghty
, Mark Hann, Stoyan Kurtev

Abstract
Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling. Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%–35%), graded exercise therapy brings about large negative responses in patients (54%–74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%–82%).
Open access at http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
 

charles shepherd

Senior Member
Messages
2,239
This is the latest research from Dr Keith Geraghty which draws upon patient evidence provided in the ME Association 'no decision about me, without me' report on CBT, GET and Pacing, published in 2015.

The MEA will be providing more commentary when we have had a chance to read the new review.

From Keith on Twitter earlier:

"@meassociation thank you for your support - to all who support the ME Association, thank you also. So much work to do, I'm inspired by you."

Executive summary of MEA report, and link to the full 294 page report on acceptability, efficacy and safety of CBT, GET and Pacing:

http://www.meassociation.org.uk/2015/05/23959/

ME Association trustees have approved a new research grant that will critically examine the theoretical basis that underlies the use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in ME/CFS.

The £25,000 grant – over two years – has been given to Dr Keith Geraghty at the University of Manchester and will challenge and review the theoretical basis and clinical application of CBT and GET in the NHS.

Dr Geraghty is an Honorary Research Fellow in Population Health, Health Sciences Research and Primary Care, where his work focuses on ME and CFS.

More details here:

http://www.meassociation.org.uk/201...-treatments-recommended-by-nice-13-july-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

charles shepherd

Senior Member
Messages
2,239
MEA Review: Geraghty et al. Pacing brings about the greatest positive impact with the least negative reactions | 02 September 2017


Published in the Journal of Health Psychology, 29 August 2017.

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Keith Geraghty, Mark Hann, Stoyan Kurtev

Introduction

In 2015, the ME Association published results of a large illness management survey that had been conducted over a period of 4 months and had elicited detailed answers about patient experiences of cognitive behavioural therapy (CBT), graded exercise therapy (GET), and Pacing (PT).

‘Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.’
Dr Keith Geraghty, founder of the ME/CFS research group, has recently published a review comparing the ME Association survey evidence with findings from 10 other similar surveys from other ME/CFS charity organisations to better understand treatment efficacy from the patient’s point of view and try to determine why patient survey responses differ from those reported in clinical trials.

⇒ Dr Geraghtyis an Honorary Research Fellow in Population Health, Health Sciences Research and Primary Care, where his work focuses on M.E. and CFS. The ME Association provided funding to help cover the costs of this recent study, and has made a further grantof £25,000 for Dr Geraghty to challenge and review the theoretical basis and clinical application of CBT and GET in the NHS.

The main findings >>

http://www.meassociation.org.uk/201...e-least-negative-reactions-02-september-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

charles shepherd

Senior Member
Messages
2,239
And.

ME Association provide new research grant to Dr Keith Geraghty to examine two controversial ME/CFS treatments recommended by NICE


ME Association trustees have approved a new research grant that will critically examine the theoretical basis that underlies the use of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in ME/CFS.


The £25,000 grant – over two years – has been given to Dr Keith Geraghty at the University of Manchester and will challenge and review the theoretical basis and clinical application of CBT and GET in the NHS.

Dr Geraghty is an Honorary Research Fellow in Population Health, Health Sciences Research and Primary Care, where his work focuses on ME and CFS.

http://www.meassociation.org.uk/201...-treatments-recommended-by-nice-13-july-2017/

CS
 
A blog on this study.
What is patently obvious to the majority of ME/CFS sufferers is not at all obvious to most others. It is not obvious to NHS staff. It not obvious to academics and politicians. It is not obvious to the public.

There are many reports of GET causing harm to ME/CFS patients. I myself was harmed by GET and you can read my brief story here on #MEAction. These accounts are not without value but the problem is that these reports are anecdotes, individual cases which have not been formally validated.

Patients are not seen as reliable witnesses when it comes to the treatments they themselves experience – at least not until a qualified academic validates that experience. But I don’t want to moan about that here, I see the need for pragmatism; we have to work within this reality to expose the harm GET causes.

This week saw a paper published in the Journal of Health Pyschology from Keith Geraghty et al, an analysis of a large survey from the ME Association (n = 1428) looking at symptom changes following GET, CBT (cognitive behavioral therapy) and pacing in ME/CFS. The results were also compared with similar data from other patient surveys (n = 16,665). One of the most significant findings of this review was that graded exercise therapy caused significant negative results in patients (54%–74%) across surveys. The review also found that CBT was associated with deterioration, but I am focusing this blog post on GET.
https://autodidactauthor.wordpress.com/2017/09/04/get-causes-harm-everyone-knows-that-right/
 
Messages
13,774
Thanks to Keith (and the other authors).

I think I'm more naturally suspicious of survey data than most, but I still liked this. Although I actually liked the introduction, before it got to the survey data, most! It felt a bit like the sign of a new dawn. I have to admit that I glossed over some of the stats... it's late!

Course attendance was also associated with symptom change (χ(4)2=17.9; p = 0.001); patients who did not attend the full course reported a significant worsening of symptoms compared with patients who attended the full course. This was particularly true if attending less than half the course.

I thought that was interesting as a possible explanation for why survey's conducted by patients tend to get much worse results for CBT/GET than survey's by CBT/GET therapists.

One little error that actually works unfairly against the paper:

Prognostic data on recovery in ME/CFS suggest a recovery rate of between 5 and 31 per cent (Cairns, 2005).

5% was acutally the median:

the median full recovery rate was 5% (range 0 – 31%