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.
This new grant will fund an incremental study, in two main phases: phase 1 being a theoretical exploration of the CBT-model of ME/CFS and phase 2 being an empirical study of patients’ experiences of CBT and GET.
Its aim will be to better understand why clinical trials are reporting seemingly different effects than are demonstrated in patient surveys and clinical outcomes.
The hypotheses driving this research are that many of the benefits reported in clinical trials, even where modest, may actually come from factors unrelated to illness belief modification, such as therapy effects, stress management advice, lifestyle advice, the power of suggestion (being asked to think more positively).
The research will also examine whether patients are adequately informed of the rationale for CBT and GET therapies, or are entered into such treatments with strong promotion by physicians and therapists – thus increasing therapy and expectancy effects.
Also, that many false positive cases of ME/CFS may be diagnosed (primarily mental health complaints that mimic the symptoms of ME/CFS – such as fatigue and sleep disturbance), in the absence of careful screening and a proper understanding of the illness. This could mean we are not seeing a true record of outcomes for a ME/CFS population.
Dr Geraghty said: “I am very grateful to the ME Association for their support. I feel a weight of responsibility to patients with the illness, their families and friends.”
“ME/CFS is an illness that devastates the lives of many, and is very poorly understood, so I hope that this work may add to the research base and shed light on this neglected illness.”
“It is important we understand how patients respond to CBT and GET in practice, rather than in clinical trials alone,” he added.
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, commented:
“We have been working with Dr Geraghty for some time on the preparation of a paper that summarises the results of our ‘patient evidence' report into the acceptability, efficacy and safety of CBT, GET and Pacing in order to get this research published in a high quality medical journal [below].”
“We have come to know Keith as a very dedicated and questioning researcher who wants to critically analyse the basis for using these two very controversial forms of treatment in ME/CFS. So we are very pleased to be able to announce that the MEA will be funding his academic work for the next two years.”
You can find more of Dr Geraghty's published work, here. It includes his most recent commentary on the PACE Trial which appeared in the Journal of Health Psychology and launched a series of similarly critical opinion pieces including from Dr Charles Shepherd.
- We will be publishing a full interview with Dr Geraghty in the November issue of ME Essential – the magazine for members of the ME Association
- A more complete summary of this new research will be added to the Research section of the website in due course
Dr Geraghty and Dr Kurtev have presented an abstract of completed research at the SAPC Annual Scientific Meeting today in Warwick.
This research had also been funded by the ME Association and it used the data from our extensive patient survey which had resulted in the 2015 ‘No decision about me, without me‘ illness management report.
We will let you know when this research is published.
Abstract:
The Effect of CBT, GET and Pacing Treatments on ME/CFS Symptoms: Analysis of a Patient Survey compared against Secondary Surveys
Conclusion:
Our results suggest that CBT and GET are of limited benefit in terms of helping ME/CFS patients improve symptoms. The majority of patients experience no benefit. In contrast, pacing brings about the greatest positive impact with the least negative reactions.
GET brings about a substantive deterioration in symptoms for around half of patients and it is the least favoured treatment approach, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes.
These findings conflict with NICE guidelines and some randomised controlled trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span fifteen years and multiple countries.
Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. All three treatment approaches have little impact on disability status.
Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET.
You can read the full abstract, here.
Thank you!
Thank you!! Appreciated, really appreciated. However, if the MEAssociation could look at heart rate abnormalities and heart rate traces that show up, as soon as a severely ill ME/CFS patient, puts on a heart rate monitor? A study with sophisticated, but readily available monitors that measure activity in 3D versus HR, would objectively demonstrate what the patients are observing and might be convince the medical fraternity that we are sick. Is it possible to fund baseline studies, on how the heart rate of people with ME/CFS, reacts to day to day activities? Are there any patients who have put on a heart rate monitor and discovered that they can stay under their anaerobic threshold (AT= 60% 220-age) easily? Are we falling into a trap set by the PACE/Cochrane/mental health personal? Is arguing over definitions, flawed science, subjective outcomes, dodgy thresholds, convoluted statistics serving our purpose, or is it confusing and complicating the medicos’ and the public? Would we achieve more, by a few targeted studies into known and easily measured physiological abnormalities, building on what patients monitoring with heart rate monitors have learnt and the science of Workwell et al? It appears odd that Peter White measured VO2 max in 1997 then dropped it. The PACE manual lists VO2 max as a measure at baseline but there is no mention of that. A test to exhaustion ie VO2 max/CPET is not necessarily a good idea but a test to fat burning/carb burning cross over ie aerobic threshold can be useful and OR no test just wearing HRM’s will show abnormal HR patterns as per the ICC criteria states.