In the past, graded exercise therapy (GET) and cognitive behaviour therapy (CBT) have been commonly recommended treatments for ME/CFS. GET has been based on the assumption that the symptoms of ME/CFS are largely the result of physical deconditioning due to lack of activity. GET has often been combined with cognitive behaviour therapy (CBT) on the assumption that activity avoidance in people with ME/CFS was fear-based, and the treatment focussed on challenging these presumed fears and encouraging increased activity. It was assumed that combined GET and CBT treatment would reverse both activity avoidance and deconditioning, leading to a reduction in symptoms and even full recovery. However, biomedical research into ME/CFS does not support the deconditioning hypothesis of ME/CFS, and GET and CBT studies do not show the high rates of recovery and improvement which would be predicted by the deconditioning hypothesis.
The central feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms worsen after physical or mental activity. PEM has been measured objectively, via two day cardiopulmonary exercise tests (CPET), which are completed 24 hours apart. In these tests, people with ME/CFS are typically unable to repeat their performance on the second day of the test, due to PEM. These results are not found in healthy, sedentary people, nor in other conditions like multiple sclerosis. Results of the 2-day CPET, and other biomedical research, support the idea that people with ME/CFS have an abnormal physiological response to exercise.
Consistent with this biomedical evidence, in surveys from around the world, people with ME/CFS commonly report experiencing harm from GET. For example, Emerge Australia’s 2018 Health and Welfare Survey found that 89% of the 610 respondents indicated that increasing their level of exercise/activity resulted in a worsening of their symptoms. Similar results have been found in patient surveys in the UK, Norway and elsewhere. This is unsurprising, given the abnormal physiological response to exercise found by researchers.
CBT is commonly used as a supportive therapy to help people with chronic illnesses to cope with and adjust to their illness. When used in this way, the purpose of CBT isn’t to treat or cure the underlying condition, but is an adjunctive therapy. Emerge Australia supports the use of CBT as adjunctive therapy, to help those living with ME/CFS to cope with the limitations which their condition brings. Emerge Australia does not support the use of CBT to challenge patients’ supposed “false beliefs” as a means of encouraging them to be more active than is safe.
The US Centers for Disease Control and Prevention (CDC), along with Emerge Australia, no longer recommend GET as a treatment for ME/CFS.
Why were GET and CBT recommended for ME/CFS?
GET and CBT became standard treatments for ME/CFS because several studies appeared to show that they were effective. However, these studies have the following issues:
Broad diagnostic criteria, which don’t require PEM as a mandatory symptom, were used for participant selection. These diagnostic criteria have been criticised for including people with other fatiguing conditions, such as depression or anxiety, which are likely to respond well to exercise. The US Agency for Healthcare Research and Quality (AHRQ) conducted a review of the evidence for GET and CBT in 2016. When excluding studies which used the broadest diagnostic criteria (which do not require PEM), the agency downgraded evidence for GET to insufficient and CBT to low.
GET and CBT studies frequently use only subjective outcome measures, such as self-rating scales, which are subject to bias (especially when used in non-blinded trials). However, when objective outcome measures are used (eg: actimeters or pedometers, 6-minute walk test, return to work or welfare rates), results do not show GET and CBT to be effective treatments for ME/CFS.
GET and CBT studies have been criticised for inadequate reporting of harms, which has led to the conclusion that GET is safe for people with ME/CFS. However, patient reports tell a different story. Doctors and patients should be aware of the risk of GET worsening ME/CFS. Blanket recommendations of GET for ME/CFS are likely to be harmful.
For a more detailed explanation of the issues with this research, please read: Post-exertional malaise and graded exercise therapy: a primer.
What treatment is recommended?
It is important to understand that exertion not only worsens symptoms in the short term but can also lead to an overall worsening of the individual’s illness on a more permanent basis. For this reason, pushing through when experiencing symptom exacerbation is not advised for people with ME/CFS. Instead, pacing activities and rest are recommended. Research has shown that those who stay within their energy limits (also known as the “energy envelope”) tend to experience fewer symptoms and have increased functional capacity than those who push themselves.
See the management page for more information about current approaches to treatment.