Patient and clinician experiences of fibromyalgia, ME/CFS and medically unexplained symptoms: A meta-aggregative systematic review

Abstract:

Objectives: Fibromyalgia (FM), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other syndromes with medically unexplained symptoms (MUS) pose significant healthcare challenges. We aimed to synthesize qualitative evidence regarding the experiences of persons with these conditions (PwC) and their healthcare professionals (HCPs).

Methods & Measures: Databases were searched using terms relating to FM/ME/CFS/MUS, Experience and Qualitative research. Studies published between 2001-2021 concerning adult PwC or HCP perspectives were included and synthesized using Meta-Aggregation, with confidence established following the ConQual approach.

Results: 143 studies were included, with 708 findings aggregated into 82 categories and 13 synthesized findings. PwC narratives reflected a range of themes concerning: The experience of symptoms; The patient journey; Identity loss and change; Managing chronic illness; Understanding and legitimacy; Support needs and experiences; Healthcare needs and experiences; and Managing the healthcare encounters. HCPs perspective themes included: Beliefs and attitudes towards patients; Sensemaking at the limits of medical knowledge; Consultation and management; The patient-clinician relationship; and Barriers and facilitators to care.

Conclusion: Sensemaking challenges are at the core of the patient and clinician experience of MUS, FM and ME/CFS. While gaps in biomedical knowledge are clear, this review highlights the need to address the patient-clinician dynamic in the context of uncertainty.

Source: Duda N, Maguire R, Gitonga I, Corrigan S. Patient and clinician experiences of fibromyalgia, ME/CFS and medically unexplained symptoms: A meta-aggregative systematic review. PsyArXiv [Preprint], 28 Apr 2023  https://psyarxiv.com/5ct4k/ (Full text)

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)

Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability

A particular application of the biopsychosocial model is associated in peer-reviewed literature and patient testimony with harms done to chronically ill and disabled people. These harms derive from an empirically unsubstantiated, neoliberal narrative emphasising the role of personal responsibility and effort in ‘recovery’ from ill-health, ignoring socio-structural contributors to chronic illness and disability. Notably, this biopsychosocial model ignores the health-related impact of welfare and disability insurance reforms which the model has been employed to justify. The model and associated interests can thus be recognised as socio-structural phenomena that should be acknowledged in any truly holistic biopsychosocial approach to chronic illness and disability. A critically informed and reflexive approach to biopsychosocial theorising would allow a more holistic and nuanced understanding of chronic illness and disability, with implications for health and social policy that underline and address what ails society as opposed to what is ‘wrong’ with the individual.

  • Points of interest
  • The biopsychosocial approach suggests that health and illness should be understood ‘holistically’. This means considering not only a person’s biology, but also their psychology (thoughts and behaviour) and social context (for example, social support levels).

  • A particular variant of biopsychosocial model, dominant in UK health and social policy, has been associated with political agendas, predominantly: welfare reform, healthcare spending cuts, and creation of profits for the disability insurance industry.

  • This variant of the model has also been associated with harms experienced by chronically ill and disabled people.

  • Any truly holistic biopsychosocial framework should acknowledge the broader social (here, political) context that has shaped this model and recognise how the model, and associated practices, may contribute to chronic illness and disability.

  • Such a framework gives rise to recommendations for health and social policy and practice that address what is wrong with society as opposed to what is ‘wrong’ with the person.

Source: Joanne Hunt (2022) Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability, Disability & Society, DOI: 10.1080/09687599.2022.2099250 (Full text)

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)

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)

A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms

Abstract:

Some illnesses and diseases are not apparent to onlookers. Conditions like chronic fatigue syndrome, fibromyalgia, multiple sclerosis, postconcussive syndrome, endometriosis, and many psychiatric illnesses, for example, have symptoms that are not easily or at all measurable. Both clinicians and health care systems, however, tend to focus exclusively on measurability, which can result in evidentiary overreliance and undervaluation of experience narratives and can have clinically, ethically, and socially important consequences for patients with these conditions.

Source: Gatison AM. A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms. AMA J Ethics. 2021 Jul 1;23(7):E519-523. doi: 10.1001/amajethics.2021.519. PMID: 34351260. https://pubmed.ncbi.nlm.nih.gov/34351260/

Reduced Heart Rate Variability in Patients with Medically Unexplained Physical Symptoms: A Meta-Analysis of HF-HRV and RMSSD

Abstract:

Objectives: Medically unexplained physical symptoms (MUPS) and related syndromes are common and place a substantial burden on both patients and society. Chronic psychological distress and dysregulation of the autonomic nervous system may be common factors associated with MUPS, although previous studies have reported mixed results. The aim of this meta-analysis is to provide an updated synthesis of studies investigating heart rate variability (HRV) indices associated with autonomic nervous system functioning in three common MUPS-syndromes and to explain inconsistencies in previous study findings.

Method: Literature search yielded 58 studies comparing HRV indices of reduced parasympathetic activity of healthy individuals to patients with chronic fatigue syndrome (Npatients = 271), irritable bowel syndrome (Npatients = 1005), and fibromyalgia (Npatients = 534). Separate random-effects meta-analyses were conducted on studies measuring root mean square of successive differences (RMSSD) and high frequency HRV (HF-HRV).

Results: Regardless of syndrome type, patients had significantly lower RMSSD (k = 22, Hedges’ g = – 0.37 [-0.53; -0.21], p < .001) and HF-HRV (k = 52, Hedges’ g = -0.69 [-1.03; -0.36], p < .001) than healthy individuals. Sample age and publication year explained substantial variation in RMSSD, whereas controlling for confounders in statistical analyses explained variation in HF-HRV.

Conclusions: Lower RMSSD and HF-HRV in patients with MUPS versus healthy controls indicates that autonomic nervous system dysregulation, particularly lower parasympathetic activity, may play a role in patients with these conditions. This conclusion may have important implications for the underlying mechanisms and treatment of MUPS and related syndromes.

Source: Vreijling SR, Troudart Y, Brosschot JF. Reduced Heart Rate Variability in Patients with Medically Unexplained Physical Symptoms: A Meta-Analysis of HF-HRV and RMSSD. Psychosom Med. 2020 Oct 14. doi: 10.1097/PSY.0000000000000874. Epub ahead of print. PMID: 33065584. https://pubmed.ncbi.nlm.nih.gov/33065584/

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)

The Effect of Comorbid Medical and Psychiatric Diagnoses on Chronic Fatigue Syndrome

Abstract:

OBJECTIVE: To determine if presence of co-existing medically unexplained syndromes or psychiatric diagnoses affect symptom frequency, severity or activity impairment in Chronic Fatigue Syndrome.

PATIENTS: Sequential Chronic Fatigue Syndrome patients presenting in one clinical practice.

DESIGN: Participants underwent a psychiatric diagnostic interview and were evaluated for fibromyalgia, irritable bowel syndrome and/or multiple chemical sensitivity.

RESULTS: Current and lifetime psychiatric diagnosis was common (68%) increasing mental fatigue/health but not other illness variables and not with diagnosis of other medically unexplained syndromes. 81% of patients had at least one of these conditions with about a third having all three co-existing syndromes. Psychiatric diagnosis was not associated with their diagnosis. Increasing the number of these unexplained conditions was associated with increasing impairment in physical function, pain and rates of being unable to work.

CONCLUSIONS: Patients with Chronic Fatigue Syndrome should be evaluated for current psychiatric conditions because of their impact on patient quality of life, but they do not act as a symptom multiplier for the illness. Other co-existing medically unexplained syndromes are more common than psychiatric co-morbidities in patients presenting for evaluation of medically unexplained fatigue and are also more associated with increased disability and the number and severity of symptoms.

Key Messages: When physicians see patients with medically unexplained fatigue, they often infer that this illness is due to an underlying psychiatric problem. This paper shows that the presence of co-existing psychiatric diagnoses does not impact on any aspect of the phenomenology of medically unexplained fatigue also known as chronic fatigue syndrome. Therefore, psychiatric status is not an important causal contributor to CFS. In contrast, the presence of other medically unexplained syndromes [irritable bowel syndrome; fibromyalgia and/or multiple chemical sensitivity] do impact on the illness such that the more of these that co-exist the more health-related burdens the patient has.

Source: Natelson BH, Lin JS, Lange G, Khan S, Stegner A, Unger ER. The Effect of Comorbid Medical and Psychiatric Diagnoses on Chronic Fatigue Syndrome. Ann Med. 2019 Oct 23:1-18. doi: 10.1080/07853890.2019.1683601. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31642345

Medically Unexplained Symptoms (MUS): Faults and Implications

Abstract:

The classification of medically unexplained symptoms (MUS) could have negative consequences for patients with functional somatic syndromes (FSS). By grouping related but distinct syndromes into one label, the MUS classification fails to inform clinicians about their patients’ health condition. In research settings, the MUS classification makes patient samples more heterogeneous, obstructing research into the underlying pathology of FSS. Long-term studies have shown that MUS are often appraised as medically explained symptoms at follow-up and vice versa, raising doubts about the reliability of this distinction.

Source: Tack M. Medically Unexplained Symptoms (MUS): Faults and Implications. Int J Environ Res Public Health. 2019 Apr 8;16(7). pii: E1247. doi: 10.3390/ijerph16071247. https://www.mdpi.com/1660-4601/16/7/1247 (Full article)