psychosomatic theory – American ME and CFS Society

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

Abstract:

Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness.

In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.

Source: Thoma M, Froehlich L, Hattesohl DBR, Quante S, Jason LA, Scheibenbogen C. Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients. Medicina. 2024; 60(1):83. https://doi.org/10.3390/medicina60010083 https://www.mdpi.com/1648-9144/60/1/83 (Full text)

Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective

Abstract:

in English, German

Background: ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that is predominantly viewed as a neuroimmunological multisystem disease, which is still unknown to many doctors in Germany or which they classify as a psychosomatic disease. From their perspective, ME/CFS patients report significant deficits in terms of medical treatment and a doctor-patient relationship (DP relationship) that is perceived as problematic. The aim of the present study is to more precisely analyse the process of finding a diagnosis as an influencing factor on the DP relationship in ME/CFS from the point of view of those affected.

Method: As part of an explorative qualitative survey, 544 ME/CFS patients (> 20 years; 455 ♀, 89 ♂) with a medical diagnosis of ME/CFS were asked in writing about their experiences with regard to the process of finding a diagnosis. The sampling was previously done by self-activation and via the snowball principle. The questionnaire to be answered was structured analogously to a focused, standardized guideline interview. The evaluation was carried out as part of a qualitative content analysis according to Mayring. Some of the results were subsequently quantified.

Results: The participants described what they saw as the inadequate process of making a diagnosis as a central factor in a problematic DP relationship in ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness, insist on their level of knowledge, ignore patient knowledge and disregard scientific information provided. They follow the standard program, think in “pigeonholes” and are incapable of systemic thinking. This has a significant impact on the DP relationship.

Discussion: From the point of view of ME/CFS patients, the process of making a diagnosis and the recognition of ME/CFS as a neuroimmunological multisystem disease are the central aspects of a DP relationship that they experience as problematic. In the past, findings classified as “subjective” and thus ignored, the pigeonholing that is characteristic of biomedically oriented medicine and a healthcare system that opposes systemic thinking when making a diagnosis have all been identified as factors that may have a significant impact on the DP relationship.

Source: Habermann-Horstmeier L, Horstmeier LM. Systemisches Denken, subjektive Befunde und das diagnostische „Schubladendenken“ bei ME/CFS – Eine vorwiegend qualitative Public-Health-Studie aus Patientensicht [Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective]. Dtsch Med Wochenschr. 2023 Dec 14. German. doi: 10.1055/a-2197-6479. Epub ahead of print. PMID: 38096913. https://pubmed.ncbi.nlm.nih.gov/38096913/

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria. Based on the ‘Biopsychosocial Model’, the psychosomatic theory proposes that patients’ dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths. The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported.

The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science. The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments. Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.

Source: David F Marks. (2022). The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms,
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Arch Epidemiol Pub Health Res, 1(2), 97-143. https://www.opastpublishers.com/peer-review/the-rise-and-fall-of-the-psychosomatic-approach-to-medically-unexplained-symptoms-myalgic-encephalomyelitis-and-chronic–4899.html (Full text available as PDF file)

Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses, and Medical Uncertainty

Abstract:

There is often difficulty differentiating between psychosomatic, somatopsychic, multisystem illness, and different degrees of medical uncertainty. Uncommon, complex, and multisystem diseases are commonly misdiagnosed. Two case histories are described, and relevant terms differentiating psychosomatic, somatopsychic, and multisystem illnesses are identified, reviewed, and discussed.

Adequate differentiation requires an understanding of the mind/body connection, which includes knowledge of general medicine, psychiatry, and the systems linking the body and the brain. A psychiatric diagnosis cannot be given solely based upon the absence of physical, laboratory, or pathological findings. Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms. The terms subjective, nonspecific, and vague can be used inaccurately. Conversion disorders, functional disorders, psychogenic illness, factitious disorder imposed upon another (Munchausen’s syndrome by proxy), somatic symptom disorder, psychogenic seizures, psychogenic pain, psychogenic fatigue, and delusional parasitosis can be over-diagnosed. Bodily distress disorder and bodily distress syndrome are scientifically unsupported and inaccurate.

Many “all in your head” conditions may be related to the microbiome and the immune system. Better education concerning the interface between medicine and psychiatry and the associated diagnostic nomenclature as well as utilizing clinical judgment and thorough assessment, exercising humility, and maintaining our roots in traditional medicine will help to improve diagnostic accuracy and patient trust.

Source: Bransfield RC, Friedman KJ. Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses, and Medical Uncertainty. Healthcare (Basel). 2019 Oct 8;7(4). pii: E114. doi: 10.3390/healthcare7040114. https://www.mdpi.com/2227-9032/7/4/114/htm (Full article)

The central role of cognitive processes in the perpetuation of chronic fatigue syndrome

Abstract:

OBJECTIVE: Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS). Cognitions and behavior are thought to perpetuate the symptoms of CFS. Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities. The evidence is reviewed that cognitive processes, particularly those that determine the perception of fatigue and its effect on behavior, play a central role in the maintenance of symptoms.

METHOD: Narrative review.

RESULTS: Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response. Additional evidence for the role of cognitive processes is found in studies comparing the subjective beliefs patients have of their functioning with their actual performance and in neurobiological research.

CONCLUSION: Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue.

Source: Knoop H, Prins JB, Moss-Morris R, Bleijenberg G. The central role of cognitive processes in the perpetuation of chronic fatigue syndrome. J Psychosom Res. 2010 May;68(5):489-94. doi: 10.1016/j.jpsychores.2010.01.022. Epub 2010 Mar 16. https://www.ncbi.nlm.nih.gov/pubmed/20403509

One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders

Abstract:

BACKGROUND: In order to clarify the classification of physical complaints not attributable to verifiable, conventionally defined diseases, a new diagnosis of bodily distress syndrome was introduced. The aim of this study was to test if patients diagnosed with one of six different functional somatic syndromes or a DSM-IV somatoform disorder characterized by physical symptoms were captured by the new diagnosis.

METHOD: A stratified sample of 978 consecutive patients from neurological (n=120) and medical (n=157) departments and from primary care (n=701) was examined applying post-hoc diagnoses based on the Schedules for Clinical Assessment in Neuropsychiatry diagnostic instrument. Diagnoses were assigned only to clinically relevant cases, i.e., patients with impairing illness.

RESULTS: Bodily distress syndrome included all patients with fibromyalgia (n=58); chronic fatigue syndrome (n=54) and hyperventilation syndrome (n=49); 98% of those with irritable bowel syndrome (n=43); and at least 90% of patients with noncardiac chest pain (n=129), pain syndrome (n=130), or any somatoform disorder (n=178). The overall agreement of bodily distress syndrome with any of these diagnostic categories was 95% (95% CI 93.1-96.0; kappa 0.86, P<.0001). Symptom profiles of bodily distress syndrome organ subtypes were similar to those of the corresponding functional somatic syndromes with diagnostic agreement ranging from 90% to 95%.

CONCLUSION: Bodily distress syndrome seem to cover most of the relevant “somatoform” or “functional” syndromes presenting with physical symptoms, not explained by well-recognized medical illness, thereby offering a common ground for the understanding of functional somatic symptoms. This may help unifying research efforts across medical disciplines and facilitate delivery of evidence-based care.

Source: Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. doi: 10.1016/j.jpsychores.2010.02.004. https://www.ncbi.nlm.nih.gov/pubmed/20403500

Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients

Abstract:

The major goal of this study was to determine indictors of long-term disability for psychosomatic inpatients with chronic fatigue syndrome. To this end, a cross-sectional study was performed with a random sample of patients (n=1000, response rate: 83.9%) at a psychosomatic inpatient clinic. 51.1% of the patients (n=429) reported intensely persistent exhaustion that had no logical relation to actual exertion. 159 (37.1%) patients in this group were disabled from working and these comprised the main target group of this study.

Significantly more patients in the target group worked part time, were disabled for a disproportionately long period of time (50.9% of all were disabled for more than 6 months in the previous year), and felt stressed because of conflicts with their superiors and/or colleagues (in each case, P<0.01). While more frequent psychological comorbidity was not found, they reported physical complaints more often. It was not the patients fit for work who felt more burdened with chronic fatigue, but rather the employment-disabled, who were actually exposed to fewer demands.

These patients had, in comparison with those fit to work, a stronger fixation on somatic complaints, inadequate perception of physical and psychic sensations, difficulties getting along with other people and in coping with a regular job (in each case, P<0.01). Prospective examination of these indicators could help detect predictor variables for long-term disability in chronic fatigue. Such predictors could contribute to timely social-medical assessment and treatment.

Source: Tritt K, Nickel M, Mitterlehner F, Nickel C, Forthuber P, Leiberich P, Rother W, Loew T. Chronic fatigue and indicators of long-term employment disability in psychosomatic inpatients. Wien Klin Wochenschr. 2004 Mar 31;116(5-6):182-9. http://www.ncbi.nlm.nih.gov/pubmed/15088993

Prospective study of the prognosis of unexplained chronic fatigue in a clinic-based cohort

Abstract:

OBJECTIVES: To determine prospective changes in clinical status related to chronic fatigue over an 18-month period, and to test demographic and clinical predictors of outcome.

METHODS: A cohort of 100 patients with unexplained chronic fatigue (UCF), which encompasses both chronic fatigue syndrome (CFS) and idiopathic chronic fatigue (ICF), completed questionnaire measures and medical and psychiatric evaluations on four occasions, each six months apart.

RESULTS: Approximately 21% of the sample did not meet criteria for either CFS or ICF at their last research appointment 1.5 years after their index visit. Vitality increased over time, and physical functioning tended to improve, but UCF symptoms did not decrease significantly. Less education, being unemployed, worse mental health, more use of sedating and antidepressant medications, and more somatic attributions for their symptoms were associated with worsening symptom severity over time. Older age, current depression, and more somatic attributions predicted worsening physical functioning. Better mental health, less use of sedating medications, and fewer somatic attributions for illness were significant predictors of increases in vitality.

CONCLUSIONS: Demographic and clinical variables predict outcomes over time among a cohort of patients with unexplained chronic fatigue.

Source: Schmaling KB, Fiedelak JI, Katon WJ, Bader JO, Buchwald DS. Prospective study of the prognosis of unexplained chronic fatigue in a clinic-based cohort. Psychosom Med. 2003 Nov-Dec;65(6):1047-54. http://www.ncbi.nlm.nih.gov/pubmed/14645784

Illness perceptions and levels of disability in patients with chronic fatigue syndrome and rheumatoid arthritis

Abstract:

OBJECTIVE: To investigate the strength of chronic fatigue syndrome (CFS) patients’ negative illness perceptions by comparing illness perceptions and self-reported disability in patients with CFS and rheumatoid arthritis (RA).

METHODS: Seventy-four RA patients and 49 CFS patients completed the Illness Perception Questionnaire-Revised and the 36-item Short-Form Health Survey.

RESULTS: When compared to the RA group, the CFS group attributed a wider range of everyday somatic symptoms to their illness, perceived the consequences of their illness to be more profound and were more likely to attribute their illness to a virus or immune system dysfunction. Both groups reported equivalent levels of physical disability but the CFS group reported significantly higher levels of role and social disability.

CONCLUSION: Although the symptoms of CFS are largely medically unexplained, CFS patients have more negative views about their symptoms and the impact that these have had on their lives than do patients with a clearly defined and potentially disabling medical condition. The data support the cognitive behavioural models of CFS that emphasise the importance of patients’ illness perceptions in perpetuating this disorder.

Source: Moss-Morris R, Chalder T. Illness perceptions and levels of disability in patients with chronic fatigue syndrome and rheumatoid arthritis. J Psychosom Res. 2003 Oct;55(4):305-8. http://www.ncbi.nlm.nih.gov/pubmed/14507540

Childhood experiences of illness and parenting in adults with chronic fatigue syndrome

Abstract:

OBJECTIVE: There are many similarities between chronic fatigue syndrome (CFS), the somatoform disorders and problems otherwise known as “medically unexplained symptoms.” There is some evidence to suggest that a combination of inadequate parenting and early illness experience may predispose the individual to develop medically unexplained symptoms in adult life. The aim of this investigation was to compare the contributions of childhood experiences of illness and parenting in adults with CFS with a fracture clinic control group.

METHOD: A retrospective case control design was used. Thirty patients with a diagnosis of CFS and 30 patients attending a fracture clinic in an inner London teaching hospital completed questionnaires measuring parental care and protection and were interviewed about childhood experiences of illness.

RESULTS: There were no differences in childhood experience of illness in the two groups. However, logistic regression revealed that maternal overprotection and depression were associated with the diagnosis of CFS.

CONCLUSION: The findings may represent risk factors for the development of CFS in adult life. It is possible that maternal overprotection in particular is related to the formation of belief systems about avoiding activity that operate to adversely influence behaviour in patients with CFS.

Source: Fisher L, Chalder T. Childhood experiences of illness and parenting in adults with chronic fatigue syndrome. J Psychosom Res. 2003 May;54(5):439-43. http://www.ncbi.nlm.nih.gov/pubmed/12726900