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)

Charities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS

People with ME/CFS feel let down by the medical establishment because almost all biomedical research until recently has been funded by the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation involving abnormal beliefs and behaviours and deconditioning. This research resulted in the current NICE guideline recommendations, published in 2007, for cognitive behavioural therapy (CBT) and graded exercise therapy (GET).3

Having reviewed clinical trial and patient evidence for these interventions,4 NICE now states in the introduction to the draft of its updated guideline on ME/CFS5 that “because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.” It also emphasises that CBT is not a treatment or cure for ME/CFS.

Read the full article HERE.

Source: Shepherd C BCharities, patients, and researchers are working together to find the cause and effective treatments for ME/CFS doi:10.1136/bmj.n1854 https://www.bmj.com/content/374/bmj.n1854.full

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: A survey

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5].

Purpose: To examine the perceived impacts of participation in online support groups on depression, anxiety and quality of life among people with ME/CFS.

Results: Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies.

Conclusion: Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience.

Source: Samantha Morehouse, Krystal Schaible, Olivia Williams, Ellen Herlache-Pretzer & Stacey Webster (2021) Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2021.1950406

Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease with the hallmark symptom of post-exertional malaise. Evidence for physiological causes is converging, however, currently no diagnostic test or biomarker is available. People with ME/CFS experience stigmatization, including the perception that the disease is psychosomatic.

In a sample of 499 participants with self-diagnosed ME/CFS, we investigated perceived stigma as a pathway through which perceived others’ causal attributions relate to lower satisfaction with social roles and activities and functional status. Higher perceived attributions by others to controllable and unstable causes predicted lower health-related and social outcomes via higher perceived stigma.

Source: Froehlich L, Hattesohl DB, Cotler J, Jason LA, Scheibenbogen C, Behrends U. Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome. J Health Psychol. 2021 Jul 9:13591053211027631. doi: 10.1177/13591053211027631. Epub ahead of print. PMID: 34240650. https://journals.sagepub.com/doi/10.1177/13591053211027631#  (Full text)

Performance Validity and Outcome of Cognitive Behavior Therapy in Patients with Chronic Fatigue Syndrome

Abstract:

Objective: There is limited research examining the impact of the validity of cognitive test performance on treatment outcome. All known studies to date have operationalized performance validity dichotomously, leading to the loss of predictive information. Using the range of scores on a performance validity test (PVT), we hypothesized that lower performance at baseline was related to a worse treatment outcome following cognitive behavioral therapy (CBT) in patients with Chronic Fatigue Syndrome (CFS) and to lower adherence to treatment.

Method: Archival data of 1081 outpatients treated with CBT for CFS were used in this study. At baseline, all patients were assessed with a PVT, the Amsterdam Short-Term Memory test (ASTM). Questionnaires assessing fatigue, physical disabilities, psychological distress, and level of functional impairment were administered before and after CBT.

Results: Our main hypothesis was not confirmed: the total ASTM score was not significantly associated with outcomes at follow-up. However, patients with a missing follow-up assessment had a lower ASTM performance at baseline, reported higher levels of physical limitations, and completed fewer therapy sessions.

Conclusions: CFS patients who scored low on the ASTM during baseline assessment are more likely to complete fewer therapy sessions and not to complete follow-up assessment, indicative of limited adherence to treatment. However, if these patients were retained in the intervention, their response to CBT for CFS was comparable with subjects who score high on the ASTM. This finding calls for more research to better understand the impact of performance validity on engagement with treatment and outcomes.

Source: Roor JJ, Dandachi-FitzGerald B, Peters MJV, Knoop H, Ponds RWHM. Performance Validity and Outcome of Cognitive Behavior Therapy in Patients with Chronic Fatigue Syndrome. J Int Neuropsychol Soc. 2021 Jun 16:1-10. doi: 10.1017/S1355617721000643. Epub ahead of print. PMID: 34130768. https://pubmed.ncbi.nlm.nih.gov/34130768/

Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected

Abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness.

Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

Source: Fennell PA, Dorr N, George SS. Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected. Healthcare (Basel). 2021 May 9;9(5):553. doi: 10.3390/healthcare9050553. PMID: 34065069. https://pubmed.ncbi.nlm.nih.gov/34065069/

Identifying and managing suicidality in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. Based on the scientific literature and our clinical/research experiences, we identify risk and protective factors and provide a guide to assessing and managing suicidality in an outpatient medical setting. A clinical case is used to illustrate how information from this article can be applied.
Characteristics of ME/CFS that make addressing suicidality challenging include absence of any disease-modifying treatments, severe functional limitations, and symptoms which limit therapies. Decades-long misattribution of ME/CFS to physical deconditioning or psychiatric disorders have resulted in undereducated healthcare professionals, public stigma, and unsupportive social interactions. Consequently, some patients may be reluctant to engage with mental health care. Outpatient medical professionals play a vital role in mitigating these effects.
By combining evidence-based interventions aimed at all suicidal patients with those adapted to individual patients’ circumstances, suffering and suicidality can be alleviated in ME/CFS. Increased access to newer virtual or asynchronous modalities of psychiatric/psychological care, especially for severely ill patients, may be a silver lining of the COVID-19 pandemic.
Source: Chu L, Elliott M, Stein E, Jason LA. Identifying and Managing Suicidality in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare. 2021; 9(6):629. https://doi.org/10.3390/healthcare9060629 https://www.mdpi.com/2227-9032/9/6/629/htm (Full text)

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

Abstract:

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria. Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

Source: Devendorf AR, McManimen SL, Jason LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2020 Nov-Dec;25(13-14):2106-2117. doi: 10.1177/1359105318785450. Epub 2018 Jul 11. PMID: 29992837. https://pubmed.ncbi.nlm.nih.gov/29992837/

Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome

Our findings revealed two broad themes in patients’ experiences with ME and CFS and suicidal ideation. The first theme captures how patients felt trapped by their illness. Many patients said they had no access to adequate resources, like a supportive friend or physician, to help them manage their illness. This sentiment was coupled with feeling hopeless about recovering from their disorder. Patients stated that many physicians wrongly think that ME and CFS are mental health conditions – when they are physical illnesses – which leads physicians to recommend inappropriate treatments like talk therapy.

Read the full  article HERE.

Original Article: Devendorf A. R., McManimen S. L., Jason L. A. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. Journal of Health Psychology. 25(13-14), 2106-2117 (2020). https://pubmed.ncbi.nlm.nih.gov/29992837/