Nomenclature – American ME and CFS Society

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 Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms.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)

Modern-Day Relics of Psychiatry

Abstract:

Constantly shifting cultural views influence public perceptions of psychiatric diagnoses, sometimes accommodated by changes in diagnostic terminology. Evolving scientific knowledge of the era is at times used to justify and support mental illnesses. Too often, however, remasked nomenclatures fail to alter social stigma, in part because political arguments are used. Scientific validations of variant behaviors as symptoms with a pathologic status are unfortunately overshadowed.

Examples of cultural bias effects on recurring diagnostic challenges illustrate a need for scientific validation. Renaming fails to improve stigma or diagnostic clarity. For example, neurasthenia, or nervous exhaustion, was attributed to fast-paced urban life through the late 1970s. Its symptoms are now largely, to no real advantage, retitled as chronic fatigue syndrome. Diagnoses like “hysteria” have evolved into histrionic personality disorder and somatoform spectrum disorders, although less as a result of demonic possession or a “wandering uterus.” Decriminalized and depathologized homosexuality remains a political football, where religious “sin” conceptualizations have not been displaced by studies documenting healthy adjustments among groups with diverse sexual orientations and preferences.

Each of these remains severely socially stigmatized. The pseudoscience of “drapetomania,” once used to rationalize and pathologize a slave’s freedom, is perceived now as psychiatric incarcerations of mentally healthy individuals, more commonly in totalitarian regimes-a politicization of stigma. Research reviews and funding efforts need to emphasize a sound basis for individuals caught in perpetuated diagnostic challenges, not remedied by simple shifts in nomenclature.

Source: Tripathi S, Messias E, Spollen J, Salomon RM. Modern-Day Relics of Psychiatry. J Nerv Ment Dis. 2019 Sep;207(9):701-704. doi: 10.1097/NMD.0000000000001059. https://www.ncbi.nlm.nih.gov/pubmed/31464983

A perspective on causation of the chronic fatigue syndrome by considering its nosology

Abstract:

The causes of chronic fatigue syndrome (CFS) remain unknown, with many failures to replicate new findings. This may be because the condition is hard to diagnose, difficult to classify, or because of its heterogeneous nature. Authors have problems in differentiating CFS from myalgic encephalomyelitis (ME), which leads many to label it as a hybrid CFS/ME or ME/CFS. Attempts to validate the many published criterion-based definitions have ended in failure. The International Classification of Diseases provide several different descriptions to choose from, although the latest 11th edition has narrowed this down. This paper describes conventional attempts to define and classify the illness, suggesting that this may be what leads to a failure to replicate putative causes. The approach to CFS/ME may require a shift in the assumption that the illness is homogeneous. An alternative approach is provided by studies suggesting that the condition is heterogeneous. ‘

CONCLUSION: The way forward may be to be over-inclusive regarding the diagnosis as a first step, while subdividing the condition into likely subgroups as a means of finding valid and reliable associations with potential causes. Studies of aetiology must involve prospective designs since cross-sectional studies cannot inform either aetiology or pathophysiology.

Source: White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology. J Eval Clin Pract. 2019 Aug 1. doi: 10.1111/jep.13240. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31373106

From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

Changes in the terminology and diagnostic criteria for chronic fatigue syndrome/myalgic encephalomyelitis are explained in this paper. This syndrome is a complex and controversial entity of unknown origins. It appears in the medical literature in 1988, although clinical pictures of chronic idiopathic fatigue have been identified since the nineteenth century with different names, from neurasthenia, epidemic neuromyasthenia, and benign myalgic encephalomyelitis up to the current proposal of disease of intolerance to effort (post-effort). All of them allude to a chronic state of generalised fatigue of unknown origin, with limitations to physical and mental effort, accompanied by a set of symptoms that compromise diverse organic systems.

The International Classification of Diseases (ICD-10) places this syndrome in the section on neurological disorders (G93.3), although histopathological findings have not yet been found to clarify it. Multiple organic alterations have been documented, but a common biology that clarifies the mechanisms underlying this disease has not been established. It is defined as a neuro-immune-endocrine dysfunction, with an exclusively clinical diagnosis and by exclusion.

Several authors have proposed to include CFS/ME within central sensitivity syndromes, alluding to central sensitisation as the common pathophysiological substrate for this, and other syndromes. The role of the family doctor is a key figure in the disease, from the detection of those patients who present a fatigue of unknown nature that is continuous or intermittent for more than 6 months, in order to make an early diagnosis and establish a plan of action against a chronic disease with high levels of morbidity in the physical and mental sphere.

OBJECTIVE: To carry out a bibliographic review of the terminology and diagnostic criteria of the chronic fatigue syndrome/myalgic encephalomyelitis, in order to clarify the pathology conceptually, as a usefulness in the diagnosis of Primary Care physicians.

Source: Murga Í, Lafuente JV. From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis. Aten Primaria. 2019 Jun 7. pii: S0212-6567(19)30191-X. doi: 10.1016/j.aprim.2019.04.004. [Epub ahead of print][Article in Spanish] https://www.ncbi.nlm.nih.gov/pubmed/31182238

Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support

Abstract:

Objective: Chronic fatigue syndrome (CFS) patients report limited social support, which can affect symptom severity. Friends are a key source of social support for young adults with CFS, but there is limited research on friends’ responses to the CFS label. We explored the potential benefits or harms of the CFS label for shaping the potential for social support from a friend’s perspective.

Method: 207 university students responded to hypothetical scenarios about a close friend experiencing CFS. Participants were randomly allocated to either the CFS-label or no-label conditions. The potential for social support was operationalised as attitude (sympathetic or hostile), intended treatment support and intended behavioural support.

Results: The CFS label elicited a greater potential for social support, with significantly higher sympathetic responses, lower rejecting responses and greater support for active treatment. These effects were significantly greater in men compared to women. There was no effect on intended behavioural support.

Conclusion: This study suggests the CFS label may increase the potential for social support. Young adults, particularly men, held more supportive attitudes towards their friend when the CFS label was used.

Practical Implications: The effects of labels on the potential for social support need to be considered when evaluating the usefulness of a disease label.

Source: Noble S, Bonner C, Hersch J, Jansen J, McGeechan K, McCaffery K. Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support. Patient Educ Couns. 2018 Oct 15. pii: S0738-3991(18)30883-8. doi: 10.1016/j.pec.2018.10.011. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30514660

CDC Grand Rounds: Chronic Fatigue Syndrome – Advancing Research and Clinical Education

Abstract:

Chronic fatigue syndrome (CFS) is a complex and serious illness that is often misunderstood. Experts have noted that the terminology “chronic fatigue syndrome” can trivialize this illness and stigmatize persons who experience its symptoms (1). The name was coined by a group of clinicians convened by CDC in the late 1980s to develop a research case definition for the illness, which, at the time, was called chronic Epstein-Barr virus syndrome. The name CFS was suggested because of the characteristic persistent fatigue experienced by all those affected and the evidence that acute or reactivated Epstein-Barr virus infection was not associated with many cases (2).

However, the fatigue in this illness is striking and quite distinct from the common fatigue everyone experiences. A variety of other names have been used, including myalgic encephalomyelitis (ME), ME/CFS, chronic fatigue immune dysfunction, and most recently, systemic exertion intolerance disease (3). The lack of agreement about nomenclature need not be an impediment for advancing critically needed research and education. The term ME/CFS will be used in this article.

Source: Unger ER, Lin JS, Brimmer DJ, Lapp CW, Komaroff AL, Nath A, Laird S, Iskander J. CDC Grand Rounds: Chronic Fatigue Syndrome – Advancing Research and Clinical Education. MMWR Morb Mortal Wkly Rep. 2016 Dec 30;65(5051):1434-1438. doi: 10.15585/mmwr.mm655051a4. https://www.cdc.gov/mmwr/volumes/65/wr/mm655051a4.htm (Full article)

Systemic exercise intolerance disease: What’s in a name?

Abstract:

The syndrome characterized primarily by chronic, disabling fatigue without adequate explanation has been of interest to patients, clinicians and researchers. Chronic fatigue syndrome (CFS) is a widely used term for this condition in scientific and lay literature but is not acceptable to many patients because of perceived stigma due to implied psychological causation.

CFS has recently been replaced by systemic exercise intolerance disease (SEID) by the Institute of medicine with the objectives of providing and disseminating evidence-based criteria and to provide a more acceptable name for this condition. Simultaneously, changes have taken place in DSM-5 with regards to this condition. Mental health professionals need to be aware of this change in the interests of patient care.

The need to replace CFS with SEID and the nosological changes also indicate an inability to do away with the Descartian mind-body dualism despite efforts to the contrary and a need to debate the failure of the bio-psycho-social model to ‘mainstream’ and destigmatize psychiatry.

Source: Sen MS, Sahoo S, Aggarwal S, Singh SM. Systemic exercise intolerance disease: What’s in a name?Asian J Psychiatr. 2016 Aug;22:157-8. doi: 10.1016/j.ajp.2016.06.003. Epub 2016 Jun 23. https://www.ncbi.nlm.nih.gov/pubmed/27520920

Comment

Lily Chu 2016 Sep 14 8:50 p.m.

As a member of the Institute of Medicine Committee, I talked to multiple patients, caregivers, clinicians, and researchers. The problem they have with the name “CFS” goes beyond psychological stigma. For one, fatigue is only one symptom of the disease but not even the most disabling one for patients. Post-exertional malaise and cognitive issues are. Secondly, most patients and families are concerned about psychological implications not because of stigmatization but simply because CFS is NOT a psychological or psychiatric condition. Some patients experience co-morbid depression, acknowledge its presence, and receive treatment for it. In support groups, patients discuss depression and anxiety without fear of stigma. The problem comes when clinicians or researchers conflate patients’ depression with their CFS and conclude that they can treat the latter condition with cognitive behavioral therapy or with SSRIs. An analogy would be if tomorrow, patients experiencing myocardial infarcts and major depression were told aspirin, B-blockers, cholesterol medication, etc. would no longer be the treatments for myocardial infarcts but instead SSRIs would be. Could you imagine how patients would feel in that circumstance? That is why they are concerned.

Reflections on the Institute of Medicine’s systemic exertion intolerance disease

Abstract:

The Institute of Medicine (IOM) in the United States has recently proposed that the term systemic exertion intolerance disease (SEID) replace chronic fatigue syndrome. In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre illness activities, unrefreshing sleep, postexertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls. A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses. Findings suggest that the new criteria select more patients who have less impairment and fewer symptoms than several other criteria. The implications of these findings are discussed in the current review.

Source: Jason LA, Sunnquist M, Brown A, McManimen S, Furst J. Reflections on the Institute of Medicine’s systemic exertion intolerance disease. Pol Arch Med Wewn. 2015;125(7-8):576-81. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4826027/ (Full article)

The most popular terms for medically unexplained symptoms: the views of CFS patients

Abstract:

OBJECTIVE: Medically unexplained symptoms/syndromes are common, highly distressing and are often associated with profound disability. One of the controversies surrounding this area relates to which umbrella term should be used to group such symptoms. The purpose of this research was to establish the preferences of patients with chronic fatigue syndrome (CFS) for an umbrella term for medically unexplained symptoms.

METHODS: A cross-sectional mixed methods survey design was used. Participants were asked to indicate their three most preferred terms out of a list of commonly used terms and to provide any extra comments. Frequency analysis was employed to look at the preferences of terms for each rank. Comments were analysed using principles of inductive thematic analysis.

RESULTS: Eighty-seven patients with CFS completed a self-report survey. The term “Persistent Physical Symptoms” was the most popular first choice term chosen by 20.7% of patients. Terms containing the word “physical” were consistently more likely to be chosen. Three main themes emerged from the thematic analysis: 1) Physical nature of the illness, 2) Stigma, and 3) Evaluation of the terms, giving a more in-depth understanding of the findings.

CONCLUSION: According to CFS patients, an umbrella term has to reflect the physical experience of MUS.

Source: Picariello F, Ali S, Moss-Morris R, Chalder T. The most popular terms for medically unexplained symptoms: the views of CFS patients. J Psychosom Res. 2015 May;78(5):420-6. doi: 10.1016/j.jpsychores.2015.02.013. Epub 2015 Feb 27. https://www.ncbi.nlm.nih.gov/pubmed/25791667

How do patients interpret terms for medically unexplained symptoms?

Abstract:

OBJECTIVE: To investigate how primary care patients interpret the existing terminology used to describe medically unexplained symptoms; to contribute to the current academic discussion on unequivocal terminology.

DESIGN: Descriptive cohort study.

METHODS: We approached patients in the waiting rooms of two general medical practices in the city of Groningen and in the province of Drenthe. Based on a fictitious case, the patients were asked to assign connotations to a number of possible diagnoses for medically unexplained tiredness. The patients could choose from seven predetermined connotations. Among the diagnoses for medically unexplained tiredness were ‘functional fatigue’, ‘chronic fatigue syndrome’, ‘psychosomatic tiredness’, and ‘medically unexplained tiredness’. From the seven connotations, we labeled three connotations as being negative. When patients gave at least one negative connotation to a possible diagnosis, the diagnosis was labeled as ‘offensive’.

RESULTS: A total of 184 patients participated in the study. From the alternative diagnoses for medically unexplained tiredness, ‘psychosomatic tiredness’ had the most negative connotations: at least one negative connotation for 65 (35%) patients. ‘Chronic fatigue syndrome’ and ‘functional fatigue’ had the fewest negative connotations: at least one negative connotation for respectively 17 (9%) and 24 (13%) patients.

CONCLUSION: The terms ‘chronic fatigue syndrome’ and ‘functional fatigue’ were less offensive. Our results could imply that terms for medically unexplained tiredness that refer less to a psychological basis are most acceptable for the patient.

Source: Kingma EM, Moddejonge R, Rosmalen J. How do patients interpret terms for medically unexplained symptoms? Ned Tijdschr Geneeskd. 2012;156(37):A4541. [Article in Dutch] https://www.ncbi.nlm.nih.gov/pubmed/22971428