Illness beliefs

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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.[1] 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.[2][3]

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.[4] The same illness beliefs hypothesis was used with severely ill patients in the similar FINE trial.[5]

Theory[edit | edit source]

Patients are expected to identify their own dysfunctional illness beliefs, but those referred to by proponents of this hypothesis controversially include:

  • The belief that ME/CFS symptoms are the result of a physical illness
  • The belief that ME/CFS needs medical treatment (physical treatment only)[1]
  • The belief that exercise or too much activity has "harmful effects"[6] which leads to "fear of exercise" (kinesiophobia)

A patient's belief does not in any way reduce the severe and sometimes debilitating symptoms that they experience on a daily basis.

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.[7] and in recent years the CDC and the UK's National Health Service have both described ME/CFS in similar terms.[8][9]

Evidence[edit | edit source]

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.[10] A study by Gallagher et al. (2005), which included Peter White, a proponent of this theory, reached a similar conclusion, stating that:

“ The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia. ”

—Arlene Gallagher, Adam Colridge, Brian Hedge, William Weir & Peter White,  Is the Chronic Fatigue Syndrome an exercise phobia? A case control study.


Criticism[edit | edit source]

Challenging patients' experience of their illness and its symptoms may result in harm, distress and patient dissatisfaction.[11][12]

Treatment[edit | edit source]

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[edit | edit source]

  • 1998, Illness beliefs and treatment outcome in Chronic Fatigue Syndrome[13] (Abstract)
  • 2005, Is the Chronic Fatigue Syndrome an exercise phobia? A case control study.[14] (Full text)

Studies critical of the role of illness beliefs[edit | edit source]

  • 2018, Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter[12] (Full text)

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 Sharpe, Michael (April 1995). "Cognitive Behavioural Therapy for Chronic Fatigue Syndrome: To the Editor". American Journal of Medicine. 98. We have found that patients' belief that their symptoms are a result of physical disease and require medical treatment is also an important factor perpetuating illness[2] by preventing the patient working on psychological and social problems inhibiting recovery.
  2. ↑ Sharpe, Michael (1995). "Cognitive Behavioural Therapy and the Treatment of Chronic Fatigue Syndrome". In Chalmers, Andrew (ed.). Fibromyalgia, Chronic Fatigue Syndrome, and Repetitive Strain Injury: Current Concepts in Diagnosis, Management, Disability, and Health Economics. Psychology Press. pp. 141–146. ISBN 9781560247449.
  3. ↑ 3.0 3.1 Geraghty, Keith J; Blease, Charlotte (September 15, 2016). "Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent" (PDF). Journal of Health Psychology. 23 (1): 127–138. doi:10.1177/1359105316667798. ISSN 1359-1053.
  4. ↑ White, PeterD.; Sharpe, Michael C.; Chalder, Trudie; DeCesare, Julia C.; Walwyn, Rebecca; PACE trial group (March 8, 2007). "Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy". BMC neurology. 7: 6. doi:10.1186/1471-2377-7-6. ISSN 1471-2377. PMC 2147058. PMID 17397525.
  5. ↑ Wearden, A.; Riste, L.; Dowrick, C.; Chew-Graham, C.; Bentall, R.; Morriss, R.; Peters, S.; Dunn, G.; Richardson, G.; Lovell, K.; Powell, P. (2006). "Fatigue Intervention by Nurses Evaluation – The FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol. [ISRCTN74156610]". BMC Medicine. 4 (9). doi:10.1186/1741-7015-4-9. PMID 16603058.
  6. ↑ Moss-Morris, Rona; Petrie, Keith J. (January 4, 2002). "Contemporary chronic fatigue syndrome: A unique entity?". Chronic Fatigue Syndrome: Experience of illness. Routledge. pp. 12–28. ISBN 9781134632831.
  7. ↑ Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi:10.17226/19012. ISBN 0309316898. PMID 25695122.
  8. ↑ Centers for Disease Control and Prevention (November 19, 2019). "Presentation and Clinical Course of ME/CFS | Information for Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS". CDC. Retrieved December 18, 2021.
  9. ↑ NICE Guideline Development Group (October 29, 2021). "Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome:diagnosis and management. NICE guideline". National Institute for Health and Care Excellence.
  10. ↑ 10.0 10.1 Nijs, Jo; Vanherberghen, Katrien; Duquet, William; De Meirleir, Kenny (August 1, 2004). "Chronic Fatigue Syndrome: Lack of Association Between Pain-Related Fear of Movement and Exercise Capacity and Disability". Physical Therapy. 84 (8). doi:10.1093/ptj/84.8.696. ISSN 1538-6724. These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widespread muscle or joint pain.
  11. ↑ 11.0 11.1 Geraghty, Keith J.; Esmail, Aneez (August 1, 2016). "Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?". Br J Gen Pract. 66 (649): 437–438. doi:10.3399/bjgp16X686473. ISSN 0960-1643. PMID 27481982.
  12. ↑ 12.0 12.1 Geraghty, Keith J.; Blease, Charlotte (June 21, 2018). "Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter". Disability and Rehabilitation: 1–10. doi:10.1080/09638288.2018.1481149. ISSN 0963-8288.
  13. ↑ Deale, A.; Chalder, T.; Wessely, S. (July 1998). "Illness beliefs and treatment outcome in chronic fatigue syndrome". Journal of Psychosomatic Research. 45 (1): 77–83. ISSN 0022-3999. PMID 9720857.
  14. ↑ Gallagher, A.M.; Coldrick, A.R.; Hedge, B.; Weir, W.R.C.; White, P.D. (April 2005). "Is the chronic fatigue syndrome an exercise phobia? A case control study". Journal of Psychosomatic Research. 58 (4): 367–373. doi:10.1016/j.jpsychores.2005.02.002. ISSN 0022-3999. The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia.
  15. ↑ Spandler, Helen; Allen, Meg (August 16, 2017). "Contesting the psychiatric framing of ME/CFS" (PDF). Social Theory & Health. 16 (2): 127–141. doi:10.1057/s41285-017-0047-0. ISSN 1477-8211.

See biopsychosocial model.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

chronic illness any long-term illness, regardless of the severity. Chronic illnesses are typically incurable, requiring long-term management.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

NICE guidelines Clinical guidelines used in the UK.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

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