Correspondence: Inaccurate reference leads to tripling of reported FND prevalence

Highlights:

  • Perez et al asserted that FND is the “2nd most common” diagnosis in outpatient neurology.
  • Stone et al (2010), cited by Perez et al, does not support the “2nd most common” claim.
  • In Stone et al, a broad “functional/psychological” category was the second most common
  • FND is not synonymous with the “functional/psychological” category in Stone et al.

To the editor:

An article in NeuroImage: Clinical“Neuroimaging in functional neurological disorder: state of the field and research agenda” (Perez et al., 2021), cited a prominent paper (Stone et al., 2010) as evidence for the assertion that functional neurological disorder (FND) is the “2nd most common outpatient neurologic diagnosis.” Although studies have yielded varying FND prevalence rates, the claim that it is the second-most common diagnosis at outpatient neurology clinics represents an erroneous interpretation of the findings of the referenced 2010 paper.

FND is the current name for what was formerly called conversion disorder, the diagnosis previously given to patients believed to have psychogenic motor and gait dysfunctions, sensory deficits, and non-epileptic seizures. According to the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders and as noted in Perez et al, FND is not a diagnosis of exclusion but requires the presence of specific “rule-in” clinical signs believed to be incompatible with known neurological disease. Some of these clinical signs have long been used by neurologists and other clinicians to help them identify cases of conversion disorder.

Stone et al.,’s (2010) paper was one of several arising from the Scottish Neurological Symptoms Study (SNSS). The study reviewed records from multiple outpatient neurology clinics and reported that 209 of 3781 attendees, or less than 6 %, received diagnoses compatible with conversion disorder–in other words, what would now be called FND. In terms of ranking, this group of patients—labeled in the SNSS as having “functional” symptoms or diagnoses–was far down the list. The study found higher rates of many other conditions, including headache (19 %), epilepsy (14 %), peripheral nerve disorders (11 %), miscellaneous neurological disorders (10 %), multiple sclerosis/demyelination (7 %), spinal disorders (6 %) and Parkinson’s disease/movement disorders (6 %).

Earlier this year, a paper in the European Journal of Neurology (Mason et al., 2023) cited a different SNSS paper (Stone et al., 2009) to support the assertion that FND prevalence at outpatient neurology clinics was 5.4 %—far lower than the percentage needed to be the “2nd most common” diagnosis. Moreover, the authors of another paper (Foley et al., 2022) have recently issued a correction for the same misstatement of FND prevalence from the SNSS findings as the one identified in Perez et al.

The assertion that the SNSS found FND to be the “2nd most common” diagnosis at outpatient neurology clinics is based on a parallel and commonly repeated claim that the study found the prevalence in these settings to be 16 % (e.g. Ludwig et al., 2018). That rate is almost three times the 5.4 % prevalence recently highlighted in Mason et al. The extra patients included in this greatly expanded FND category were another 10 % collectively identified in the SNSS as having “psychological” symptoms or diagnoses. These “psychological” patients fell into a range of clinical sub-categories, among them hyperventilation, anxiety and depression, atypical facial/temporomandibular joint pain, post-head injury symptoms, fibromyalgia, repetitive strain injury, and alcohol excess. The SNSS paper cited in Perez et al reported that a combined grouping of the patients with “functional and psychological” symptoms or diagnoses had a prevalence of 16 % but did not provide any evidence that the 10 % included under the “psychological” label met, or could have met, the explicit FND requirement for rule-in clinical signs.

FND is not synonymous with the broader “functional and psychological” category in the SNSS and should not be presented as if it were. The post-hoc reinterpretation of previously reported data in a way that conflates FND with other complex conditions—almost tripling its apparent prevalence in the process–is an example of the phenomenon known as diagnostic creep. In any event, the SNSS results are a matter of record. Whatever future studies might determine about FND rates, the published findings cited by Perez et al and addressed in this letter do not support either the claim that it is the “2nd most common” diagnosis in outpatient neurology clinics or the related claim that its prevalence at these venues is 16 %.

Sincerely–

David Tuller (corresponding author)

Center for Global Public Health

School of Public Health

University of California, Berkeley

Berkeley, CA, USA

David Davies-Payne

Department of Radiology

Starship Children’s Hospital

Auckland, New Zealand

Jonathan Edwards

Department of Medicine

University College London

London, England, UK

Keith Geraghty

Centre for Primary Care and Health Services Research

Faculty of Biology, Medicine and Health

University of Manchester

Manchester, England, UK

Calliope Hollingue

Center for Autism and Related Disorders/Kennedy Krieger Institute

Department of Mental Health/Johns Hopkins Bloomberg School of Public Health

Johns Hopkins University

Baltimore, MD, USA

Mady Hornig

Department of Epidemiology

Columbia University Mailman School of Public Health

New York, NY, USA

Brian Hughes

School of Psychology

University of Galway

Galway, Ireland

Asad Khan

North West Lung Centre

Manchester University Hospitals

Manchester, England, UK

David Putrino

Department of Rehabilitation Medicine

Icahn School of Medicine at Mt Sinai

New York, NY, USA

John Swartzberg

Division of Infectious Diseases and Vaccinology

School of Public Health

University of California, Berkeley

Berkeley, CA, USA

Source: Correspondence: Inaccurate reference leads to tripling of reported FND prevalence. Neuroimage Clin. 2024 Feb 7;41:103537. doi: 10.1016/j.nicl.2023.103537. Epub ahead of print. PMID: 38330816. https://www.sciencedirect.com/science/article/pii/S2213158223002280 (Full text)

Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Abstract:

Whilst parallels have been drawn between Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), there is a well-documented history of negative stereotyping and marginalisation of patients with ME/CFS. A socio-politically oriented comparison of scientific, clinical and societal responses to Long Covid and ME/CFS is thus important to prevent similar harms arising among Long Covid patients. We identify four reasons for injustices in the treatment of ME/CFS patients, and discuss the risk of Long Covid following a similar trajectory. We conclude with policy and practice recommendations to help prevent such injustices arising again, including consideration of critical reflexivity in medical education.

Source: Hunt J, Blease C, Geraghty KJ. Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Health Psychol. 2022 Mar 27:13591053221084494. doi: 10.1177/13591053221084494. Epub ahead of print. PMID: 35341334. https://pubmed.ncbi.nlm.nih.gov/35341334/

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Abstract:

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).

Source: Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2019 Sep;24(10):1318-1333. doi: 10.1177/1359105317726152. Epub 2017 Aug 29. PMID: 28847166. https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full (Full text)

ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Abstract:

Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord.

Methods: A narrative review methodology is employed to synthesize the evidence for potential iatrogenesis.

Results: We identify seven potential modalities of iatrogenesis or harm reported by patients: difficulties in reaching an acceptable diagnosis; misdiagnosis, including of other medical and psychological conditions; difficulties in accessing the sick role, medical care and social support; high levels of patient dissatisfaction with the quality of medical care; negative responses to controversial therapies (cognitive behavioral therapy and graded exercise therapy); challenges to the patient narrative and experience; psychological harm (individual and collective distress).

Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.

Implications for rehabilitation: Patients with ME/CFS may report or experience one or more of the modalities of harms and distress identified in this review. It is important health and rehabilitation professionals seek to avoid and minimize harms when treating or assisting ME/CFS patients. There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model and a biomedical model that is preferred by patients. The ‘biopsychosocial framework’ applied in clinical practice promotes treatments such as cognitive behavioral therapy and exercise therapy, however, the evidence for their success is contested and many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits, or behaviors. Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant ‘patient-centred’ approaches that give greater prominence to the patient narrative and experience of illness.

Source: Geraghty KJ, Blease C. Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter. Disabil Rehabil. 2019 Dec;41(25):3092-3102. doi: 10.1080/09638288.2018.1481149. Epub 2018 Jun 21. PMID: 29929450. https://pubmed.ncbi.nlm.nih.gov/29929450/

The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model

Abstract:

The American Psychiatric Association’s, 2013 DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders. In the UK, treatments for various medical illnesses with unexplained aetiology, such as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia, continue to fall under an MUS umbrella with cognitive behavioural therapy promoted as a primary therapeutic approach. In this editorial, we comment on whether the MUS concept is a viable diagnostic term, the credibility of the cognitive-behavioural MUS treatment model, the necessity of practitioner training and the validity of evidence of effectiveness in routine practice.

Source: Scott MJ, Crawford JS, Geraghty KJ, Marks DF. The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model. Journal of Health Psychology. September 2021. doi:10.1177/13591053211038042 https://journals.sagepub.com/doi/10.1177/13591053211038042 (Full text)

An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Abstract:

Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it.

Materials and Methods: Participants at the training event were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test.

Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment.

Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education.

Source: Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina (Kaunas). 2021 Aug 27;57(9):885. doi: 10.3390/medicina57090885. PMID: 34577808. https://pubmed.ncbi.nlm.nih.gov/34577808/

The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model

Abstract:

The American Psychiatric Association’s, 2013 DSM-5 abandoned the use of the term ‘medically unexplained symptoms’ for non-neurological disorders. In the UK, treatments for various medical illnesses with unexplained aetiology, such as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia, continue to fall under an MUS umbrella with cognitive behavioural therapy promoted as a primary therapeutic approach. In this editorial, we comment on whether the MUS concept is a viable diagnostic term, the credibility of the cognitive-behavioural MUS treatment model, the necessity of practitioner training and the validity of evidence of effectiveness in routine practice.

Source: Scott MJ, Crawford JS, Geraghty KJ, Marks DF. The ‘medically unexplained symptoms’ syndrome concept and the cognitive-behavioural treatment model. J Health Psychol. 2021 Sep 23:13591053211038042. doi: 10.1177/13591053211038042. Epub ahead of print. PMID: 34554009. https://journals.sagepub.com/doi/10.1177/13591053211038042 (Full text)

An audit of UK hospital doctors’ knowledge and experience of Myalgic Encephalomyelitis

Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it.
Materials and Methods: Participants at the training event were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test.
Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment.
Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education.
Source: Hng KN, Geraghty K, Pheby DFH. An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina. 2021; 57(9):885. https://doi.org/10.3390/medicina57090885 https://www.mdpi.com/1648-9144/57/9/885/htm (Full text)

The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition that greatly impacts the lives of sufferers. Many sufferers report problems getting a confirmatory diagnosis and difficulties getting doctors to believe them and offer support. Objective: This paper explores this issue by examining a biopsychosocial (BPS) model of ME/CFS promoted within psychiatry and its potential influence on how doctors might view and manage the illness.

Method: A narrative literature review is undertaken to identify salient theory and discourse for consideration.

Findings: Psychiatrists proffer a hypothetical model of ME/CFS aetiology and continuance, that instructs doctors to view the illness as a syndrome perpetuated by psycho-social factors that sustain unexplained symptoms such as fatigue, pain and post-exertional malaise, rather than symptoms being related to biological disease processes. The psychiatric model theorises that patients’ symptoms are maintained by their maladaptive beliefs and behaviours, requiring psychotherapy.

Conclusion: The psychiatric BPS model of ME/CFS may negatively bias how physicians approach the illness, with doctors directed to view patients’ complaints as manifestations of psychological distress, rather than physical symptoms that require medical investigation or intervention. This finding may help explain why many ME/CFS patients feel disbelieved and unsupported after seeking medical care. Psychiatric theory fails to acknowledge or incorporate a substantial body of evidence showing biological deficits associated with ME/CFS. Medical trainees and physicians need more training and clinical exposure to ME/CFS patients, armed with better awareness of misleading and unproven claims associated with the BPS model.

Source: Keith Geraghty (2020) The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2020.1834295 https://www.tandfonline.com/doi/abs/10.1080/21641846.2020.1834295?journalCode=rftg20

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Abstract:

BACKGROUND: Improving Access to Psychological Therapies is a UK Government funded initiative to widen access to psychological treatment for a range of common mental health complaints, such as depression and anxiety. More recently, the service has begun to treat patients with medically unexplained symptoms. This paper reports on a review of treatment protocols and early treatment data for medically unexplained symptoms, specifically the illness myalgic encephalomyelitis/chronic fatigue syndrome.

MAIN TEXT: A series of seven core problems and failings are identified, including an unproven treatment rationale, a weak and contested evidence-base, biases in treatment promotion, exaggeration of recovery claims, under-reporting of drop-out rates, and a significant risk of misdiagnosis and inappropriate treatment.

CONCLUSIONS: There is a pressing need for independent oversight of this service, specifically evaluation of service performance and methods used to collect and report treatment outcomes. This service offers uniform psycho-behavioural therapy that may not meet the needs of many patients with medically unexplained health complaints. Psychotherapy should not become a default when patients’ physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part. Patients who reject psychotherapy or do not meet selection criteria should be offered appropriate medical and psychological support.

Source: Geraghty K, Scott MJ. Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified. BMC Psychol. 2020 Feb 5;8(1):13. doi: 10.1186/s40359-020-0380-2. https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-020-0380-2 (Full article)