Illness beliefs

The illness beliefs hypothesis posits that specific beliefs relating to ME/CFS are found in patients, and that these beliefs are maintaining factors which prevent recovery, and may even increase the severity of the illness. These illness beliefs have been described as "negative thoughts", "dysfunctional" or "unhelpful" beliefs which, according to this hypothesis, result in "maladaptive" behaviors that prevent people recovering from ME/CFS.

The illness beliefs hypothesis is part of the biopsychosocial model (BPS) and is used to justify the use of cognitive behavioral therapy (CBT) as a primary treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), rather than its use as a treatment only for patients with depression, anxiety or emotional problems resulting from CFS. For example in the PACE trial CBT was tested to determine whether it helped people could "recover" from ME/CFS, with improvements in depression or anxiety considered to be secondary outcomes. The same illness beliefs hypothesis was used with severely ill patients in the similar FINE trial.

Theory
Patients are expected to identify their own dysfunctional illness beliefs, but those referred to by proponents of this hypothesis controversially include: A patient's belief does not in any way reduce the severe and sometimes debilitating symptoms that they experience on a daily basis.
 * The belief that ME/CFS symptoms are the result of a physical illness
 * The belief that ME/CFS needs medical treatment (physical treatment only)
 * The belief that exercise or too much activity has "harmful effects" which leads to "fear of exercise" (kinesiophobia)

However, many of these proposed "dysfunctional beliefs" are scientific facts supported by evidence, rather than false beliefs. For example, the Institute of Medicine report in 2015 described ME/CFS as serious, complex, chronic biological (physical) disease. and in recent years the CDC and the UK's National Health Service have both described ME/CFS in similar terms.

Evidence
A study in the Netherlands by Nijs et al. (2004) was unable to find an association between fear of exercise and level of disability or exercise capacity in people with CFS who experienced muscle or joint pain. A study by Gallagher et al. (2005), which included Peter White, a proponent of this theory, reached a similar conclusion, stating that:

Criticism
Challenging patients' experience of their illness and its symptoms may result in harm, distress and patient dissatisfaction.

Treatment
CBT is proposed to encourage the person to challenge and alter their illness beliefs, and any behaviors that result from these beliefs. The illness beliefs may be referred to as "unhelpful thoughts", which the person should work to identify, and then look at evidence for or against each belief, then re-evaluate these beliefs. CBT involves finding actions (behaviors) that result from the unhelpful thoughts (illness beliefs) and deciding which behaviors to change. The CBT model also states that changing behaviors related to the illness can change the thoughts linked to those behaviors.

The CBT used for ME/CFS is specific to the illness, and has components not found in CBT that has been used with patients who have cancer, Multiple sclerosis (MS) or other chronic illnesses.

Notable studies

 * 1998, Illness beliefs and treatment outcome in Chronic Fatigue Syndrome (Abstract)


 * 2004, Chronic Fatigue Syndrome: Lack of Association between Pain-Related Fear of Movement and Exercise Capacity and Disability


 * 2005, Is the Chronic Fatigue Syndrome an exercise phobia? A case control study. (Full text)


 * 2017, Contesting the psychiatric framing of ME/CFS (Full text)

Studies critical of the role of illness beliefs

 * 2016, "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?"


 * 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter (Full text)

Learn more

 * Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent
 * PACE trial Cognitive Behavioral Therapy manual for participants