In January 2019, Forward-ME launched a survey to gather evidence on patients’ experiences of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), to feed into the ongoing Guideline review being undertaken by NICE. As part of this process, Forward-ME welcomed the opportunity to ensure that the views of patients were taken into account at an early stage.

The focus of the survey was deliberately narrow, concentrating solely on CBT and GET, which are key issues for people with ME/CFS. The findings were analysed independently by a team from Oxford Brookes University, before being submitted to NICE at the end of February 2019.

The survey was designed for adults and children diagnosed with myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), ME/CFS, or post-viral fatigue syndrome (PVFS), and who had undertaken or been offered CBT or GET in the UK since 2007.

Below, you can find a link to the final report containing the results of the survey. Underneath that, for quicker reference, we have summarised the findings of the survey in figures and graphs.

Foreword by the Countess of Mar

We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward-ME by Professor Helen Dawes and her team at Oxford Brookes University.

Bearing in mind that this survey was organized at very short notice and that we are aware that there are some shortcomings such as a selective bias in that only people with on-line access and the ability to complete the questionnaire were included, we are very grateful to all who responded so quickly.

The results have been well received by the Chairman of the NICE Guideline Development Group and will, we hope, be helpful to the Group as they develop the new guideline for ME/CFS.

The report in full is available in pdf format at the link below:

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes

Executive Summary & ME Research UK’s Summary of the results

Oxford Brookes University's Executive summary

In total 2,274 responses were received for the survey. The majority of (87%) responses were self-reported, with (62.4%, 1419 people) reporting their condition was moderate before treatment. In this survey, individuals were asked if they started cognitive behaviour therapy (CBT), Graded Exercise Therapy (GET), or both CBT and GET treatment courses. Where they reported combined treatment, they were asked to comment on CBT and GET components separately. Approximately 35% were offered CBT, 23.8% GET and 41.5% combined CBT and GET.

Overall, respondents to the survey who started CBT alone or as a component of CBT/GET were more likely to complete the course than those who started GET alone. Those who ceased CBT alone or in combination with GET most commonly cited being too ill to continue and/or the practitioner recommending cessation of treatment. For GET the most common reason for stopping treatment was worsening symptoms.  The impact of treatment was evaluated through patient-reported improvement or deterioration of physical and mental health following treatment. For participants receiving CBT alone or combined with GET, approximately 70% of respondents reported completing the course. With CBT on its own, approximately 79% of participants reported either no change (53%) or deterioration (26.4%) in physical health after CBT treatment, whereas 41.5% reported an improvement in mental health with 55% reporting no improvement (28.1%) or deterioration (26.9%).  Overall, responders reported that CBT was more helpful than harmful for mental health outcomes.

With GET on its own, the majority of responders reported not completing the course (61%), of those that started the course 81% reporting worsening of symptoms. Approximately 79% of people reported no improvement (11.7%) or deterioration (67.1%) in physical health.  79% of people reported that GET led to no change (25.5%) or worsening (53%) of mental health after GET.

When reporting on the CBT component of a combined CBT/GET course responders predominantly (84%) reported no effect (48.4) or worsening (35.5%) of physical health with 67% reported no effect (32.7%) or worsening (34.4%) of mental health.  Responders were also asked whether any symptoms had worsened with CBT in combination with GET.  Over half of responders (58.3%) reported that CBT, when undertaken with GET, worsened their symptoms. CBT when combined with GET appears to have a less positive effect than when delivered on its own.

When reporting on the GET component of a combined CBT/GET course, 48.4% completed the course with approximately 87% reporting no effect (11.2%) or deterioration (75%) in physical health, and  87% reporting no effect (24.3%) or deterioration (62.9%) in mental health. 80% percent of responders reported that GET, when combined with CBT, had worsened their symptoms.

The effect of treatment was further evaluated through reported ability to resume or carry out employment or education, as well as a reported effect on claiming Department of Work and Pensions (DWP) benefits. For both treatments, whether alone or combined most respondents (78.8% or more) reported the treatment did not affect their claiming DWP benefits.

CBT alone did not affect returning to work or school for most individuals, 77% of respondents reported no change, 21.8% reported a change. However, GET alone and CBT and GET treatments in combination had more of an effect on the ability to return to work or school, with a range of 44.4-47.2% of respondents reporting a change.

In summary, the majority of individuals reported no change or deterioration in symptoms and health over the course of all treatment approaches, those participating in CBT on its own reported the treatment to have a more positive impact on symptoms and physical and mental health.

Demographics

  • In total 2,274 responses were received for the survey. Most responses (87%) were self-reported, 8.1% of responses were completed on behalf of a child and 4% were completed by a carer on behalf of an individual with ME.
  • Survey participants spanned age ranges from 12 and under (0.7%) through to 71+ (1.1%). Most responders were in the age range 41–50 (26.6%).
  • Of the 2,274 participants, 80.4% identified as female and 16.9% identified as male. The remaining participants identified as ‘non-binary’, ‘other’ or preferred not to say.
  • Most people (62.4%) said their condition was ‘moderate’ before treatment with the remainder stating their condition was either ‘mild’ (23.8%) or ‘severe’ (13.8%).
  • Participants were also asked if they experienced any post-exertional malaise (PEM), with 95.8% responding ‘yes’.
  • Of all the participants who completed the survey, more individuals had been offered combined CBT and GET (41.5%) than either CBT alone (34.7%) or GET alone (23.8%).

CBT Alone

The Course

  • Of the 789 respondents who said they had been offered a course of CBT, 93.3% were offered it through the NHS and 84.9% started a CBT course.
  • CBT courses were reported to have been delivered through a range of clinicians, the most common was a cognitive behavioural therapist reported by 49.9% of respondents with most respondents reporting 6 sessions (19.4%) and having received individual treatment (83%).
  • 70% of participants completed the course; 21.6% did not and 8.4% were still participating in a course of CBT. 
  • Those people who did not complete the course mentioned they were too ill to continue, including worsening of symptoms of post-exertional malaise (PEM), stress and anxiety. In addition, many respondents quoted treatment being stopped by the practitioner due to detrimental effects or CBT being unnecessary for the individual.

Health Outcomes

  • Most people with ME (53%) reported no change in physical health.
  • More respondents (26.4%) reported a deterioration in physical health after CBT than any improvement (16.2%).
  • People with ME most often reported an improvement in mental health after CBT (41.5%), with 28.1% reporting no change and 26.9% reporting worsened mental health.
  • From those who started the CBT course, 46.6% reported worsening of any symptoms. These respondents described how their symptoms had worsened – words used included fatigue, pain and brain fog. However, 71.8% reported no new symptoms.
  • Of those who started CBT, most respondents (66%) reported that before any treatment the severity of their condition was rated as ‘moderate’. When asked to rate their condition after treatment with CBT, most responded again as ‘moderate’ (59.9%). The proportion rating their condition as ‘severe’ went from 10.9% before treatment to 19.1% after CBT.
  • 65.2% of respondents were not offered other treatments in addition to CBT.

Effects

  • The survey asked respondents who started if the course of CBT resulted in any change in their ability to carry out or resume employment or education. 77% said ‘no’ and 21.8% stated ‘yes’.
  • All respondents who were offered CBT were asked if the course (completed or non-completed) had an effect on any Department for Work and Pensions (DWP) benefits (i.e. Employment and Support Allowance (ESA), Personal Independence Payment (PIP), Disability Living Allowance (DLA)) that were being claimed. Of the 670 who started CBT most (88.7%) reported no effect on DWP benefits.
  • Out of the 119 people who did not start CBT, 87.4% reported no effect on DWP benefits, 8.4% responded ‘yes’ to an effect and 4.2% did not answer.

GET Alone

The Course

  • Of the 542 respondents who answered that they had been offered a course of GET, 95.2% were offered it through the NHS and 79% started the course.
  • GET courses were reported to have been delivered through a range of clinicians, the most common was a physiotherapist reported by 48.4%, with most reporting 6 sessions (10%) and having received individual treatment (78.5%).
  • The majority of responders (60.7%) did not complete the course of GET. 29.7% of responders completed the course, and 9.6% were still participating in a course of GET. 
  • Those people who did not complete the course mentioned an increase of symptoms, pain, discomfort, deterioration and relapse for stopping GET. 

Health Outcomes

  • 67.1% of people with ME reported deterioration in physical health after GET.
  • 13.3% reported an improvement in physical health with GET, while 11.7% reported no improvement.
  • GET was reported to cause deterioration in mental health in most respondents (53%). 25.5% reported no improvement/change in mental health and 12.8% reported improvement.
  • From those who started the GET course, 81.1% reported worsening of any symptoms. These respondents described how their symptoms had worsened –  words used included, fatigue, pain, and brain fog. However, 54.4% reported no new symptoms.
  • Of those who started GET, most respondents (62.1%) reported that before treatment the severity of their condition was rated as ‘moderate’. When asked to rate their condition after treatment with GET, most responded again as ‘moderate’ (49.5%). The proportion who rated their severity as ‘severe’ before GET was 12.9%, which increased to 35.3% after GET.
  • 55.1% were not offered other treatments in addition to GET. 43.7% were offered other treatments.

Effects

  • The survey asked respondents who started if the course of GET resulted in any change in their ability to carry out or resume employment or education. 53.7% said ‘no’ and 44.6% stated ‘yes’.
  • 44.6% of respondents who started a course of GET reported changes in their employment after GET, and 53.7% also reported major change in their physical health.
  • All respondents who were offered GET were asked if the course (completed or non-completed) had an effect on any Department for Work and Pensions (DWP) benefits (i.e. ESA, PIP, DLA) that were being claimed. Of the 428 who started GET, most (83.6%) reported no effect on DWP benefits. 14.5% reported an effect.
  • Out of the 114 who did not start GET, 84.2% reported no effect on DWP benefits, and 15.8% responded ‘yes’ to an effect

CBT with GET combined

The Course

Responses for CBT Component

  • Of the 943 respondents who said they had been offered a course of CBT (combined with GET) – 93% were offered through the NHS and 76.9% started the course.
  • CBT courses were reported to have been delivered through a range of clinicians, the most common was a cognitive behavioural therapist reported by 32.8% of respondents with most common report was 6 sessions (15.9%) and having received individual treatment (68.7%).
  • 70.3% of participants completed the courses, 24.8% did not and 4.8% were still participating in a course of CBT.
  • Those who did not complete the courses mentioned they were too ill to continue with worsening of symptoms, inability to keep up with attendance, and being discharged from the service.

Responses for GET Component

  • Of the 943 respondents who said they had been offered a course of CBT (combined with GET), 94.3% were offered through the NHS and 75% started the course.
  • GET courses were reported to have been delivered through a range of clinicians, the most common was a physiotherapist reported by 46.1% of respondents, with most reporting 6 sessions (11.5%) and having received individual ‘treatment’ 68.3%.
  • 48.4% of participants completed the courses, 45.3% did not, and 6.4% were still participating in a course of CBT.
  • Those who did not complete the course mentioned an increase of symptoms, pain, deterioration and worsening of symptoms as reasons.

Health Outcomes

Responses for CBT Component

  • 48.4% of respondents reported no improvement to physical health with CBT (with GET combined).
  • 11.6% of respondents reported an improvement in physical health, while 35.5% reported deterioration in physical health with CBT.
  • Responses to the impact on mental health were mixed, with 34.3% of respondents reporting deterioration, 32.7% reporting no improvement and 29.4% reporting an improvement in mental health with CBT in combination with GET.
  • From those who started the CBT course (combined with GET), 58.3% reported worsening of any symptoms. These respondents describe how their symptoms had worsened and words used included brain, mental, pain, health, symptoms, cognitive, function, energy and malaise. However, respondents were also asked if they developed any new symptoms, with most (64.6%) responding ‘no’ and 29% as ‘yes’.
  • Of those who started CBT, most respondents (63.3%) reported that before any treatment the severity of their condition was rated as ‘moderate’. When asked to rate their condition after treatment with CBT most (57.4%) responded again as ‘moderate’. The ‘mild’ group reduced from 24.1% before treatment to 16% after treatment. The ‘severe’ group increased from 12.6% to 26.6% after treatment.
  • 63.9% of respondents were offered other treatments in addition to CBT.

Responses for GET Component

  • CBT (combined with CBT) was reported to have a deterioration in physical health in most respondents (75.4%).
  • 9.6% of respondents reported an improvement in physical health with GET, while 11.2% reported no improvement.
  • Responses to the impact on mental health showed GET (combined with CBT) caused a deterioration in mental health in most respondents (62.9%); 24.3% of respondents reporting no improvement and 8.6% reporting an improvement in mental health.
  • From those who started the GET course (combined with CBT), 85.9% reported worsening of any symptoms. These respondents describe how their symptoms had worsened and words used included, pain, muscle, brain fog, health, fatigue and malaise. However, respondents were also asked if they developed any new symptoms with 48.4% responding ‘no’ and 44.4% responding ‘yes’.
  • Of those who started GET, most respondents (61.7%) reported that before any treatment the severity of their condition was rated as ‘moderate’. When asked to rate their condition after treatment with GET the most common response was again ‘moderate’ (46%). The ‘severe’ group more than tripled from 13.2% to 41.9% after a GET course (combined with CBT).

Effects

Responses for CBT Component

  • The survey asked respondents who started if the course of CBT resulted in any change in their ability to carry out or resume employment or education. 54.5% said ‘no’ and 44.4% stated ‘yes’. NB the responses were not value coded – see full report.
  • All respondents who were offered CBT were asked if the course (completed or non-completed) had an effect on any Department for Work and Pensions (DWP) benefits (i.e. ESA, PIP, DLA) that were being claimed. Of the 725 who started CBT, most (80.3%) reported no effect on DWP benefits.
  • Out of the 218 who did not start CBT, 76.1% reported no effect on DWP benefits, 21.1% responded ‘yes’ to an effect.

Responses for GET Component

  • The survey asked respondents who started if the course of GET resulted in any change in their ability to carry out or resume employment or education. 51.6% said ‘no’ and 47.2% stated ‘yes’.
  • All respondents who were offered GET were asked if the course (completed or non-completed) had an effect on any Department for Work and Pensions (DWP) benefits (i.e. ESA, PIP, DLA) that were being claimed. Of the 707 who started GET, 78.8% reported no effect on DWP benefits. 20.1% responded ‘yes’ to an effect.
  • Out of the 236 who did not start GET, 80.9% reported no effect on DWP benefits, 16.9% responded ‘yes’ to an effect.

Graphs