ME/CFS Illness Management Survey Results

“No Decisions about me without me”

The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website) is comprehensive and only part 1 of 2. Part one, outlined below, deals with the qualitative and quantitative analysis of the study data. Part 2 (already underway) will cover illness management techniques from the patient perspective and proposed amendments to the NICE guidelines. Direct quotes from the report are bolded below.

Report Summary

“With regard to the effect courses had on illness severity, we found that GET resulted in the most significant change with more patients who attended such courses reporting their illness had become more severe as a result.”
Graded Exercise Therapy or GET made most patients with ME/CFS get worse. According to the study results, about 75% of people who participated in a GET program felt that their illness got more severe as a result.
Where patients attended a CBT, GET or Pacing course which had no overlapping elements of the other two interventions, more reported an improvement in symptoms following their Pacing course than did those who attended either of the other courses. CBT resulted in 91% of participants feeling their ME/CFS symptoms were unaffected or made worse, GET 88%, and Pacing 55%.

Looking at the numbers, cognitive behavioral therapy (CBT) and graded exercise therapy seem to have a similar result. But when you look at the graphic there’s a very important distinction. While 74% of patients on graded exercise therapy got worse, 73% of people on cognitive behavioral therapy had no change to their condition. For most patients, ME/CFS symptoms were not improved by cognitive behavioral therapy but only 18% reported a worsening of their condition.
It was clear that the majority of patients attending Pacing courses with no overlapping elements found this management approach more appropriate to their needs than did those who attended either CBT only or GET only courses. Only a small minority of GET and CBT courses were appropriate to needs.
Only 8% of those who participated in cognitive behavioral therapy and 12% of those in graded exercise found it improved their ME/CFS. By comparison, 45% (or nearly half) of patients with ME/CFS improved by participating in a pacing course!
Symptoms were reported as having improved or as remaining unaffected by more patients where therapists leading a course recognised ME/CFS to be a physical illness than where therapists believed the illness was psychological. Symptoms were deemed to have been made notably worse where courses were led by therapists holding this psychological belief even for Pacing.
This may be one of the most important distinctions in the report. With a 45% success rate, pacing cannot be considered a surefire treatment for ME/CFS. Instead, the course was dependent on the therapists leading the course. Without an understanding of the physical (not psychological) nature of the illness, the treatment was not as effective. Therapists offering pacing courses should recognize ME/CFS as a physical illness in order to maximize a patient’s chance of improvement.
Patients who were not offered or who were refused courses reported the main reason as being that no courses were available in their area. The second reason was judged to be that many patients were considered unlikely to benefit from the offered courses, and also of note was a lack of access to courses and no available home-visit option.
If patients don’t have access, they’re not going to be able to attend. That’s the main takeaway from this section. Disregarding those patients who had access but chose not to attend an offered course, most patients who didn’t participate did so because they couldn’t. Courses may not be available to those who live far from a major treatment center and especially to the severely ill who lack the ability to leave the house and attend a course.
For those who were on benefits, it was most notable that irrespective of the course undertaken, claims remained largely the same with few reducing or stopping their benefits. However, net overall increases were seen in benefits following courses in CBT and GET compared to a slight decrease from those attending Pacing courses.
Disability benefits were mostly unaffected by participation in any of the courses. But it’s not surprising that there was a slight increase in disability benefits for some patients after participating in cognitive behavioral therapy and graded exercise therapy since many patients became more severely ill. There was also a slight decrease in disability benefits for some after participating in a pacing course, likely due to an overall improvement. But all these changes were small and did not occur for the majority of patients.

Report Conclusions

We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.
Cognitive behavioral therapy had no noticeable impact for the majority of ME/CFS patients so the report concludes that it should not be considered a primary treatment option.
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
Graded exercise therapy made the majority of ME/CFS patients get worse so the report concludes that it should be withdrawn completely as a primary treatment.
Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.
Pacing won. Out of the three, it showed the most positive results and the fewest negative results for ME/CFS patients. But it’s important to remember that the positive results were more strong when therapists acknowledged ME/CFS as a physical and not a psychological condition.
What did you think about the report? Do you agree with the findings? What do you hope to see in part 2?