Graded exercise therapy and cognitive behavior therapy do not improve employment outcomes in ME/CFS

1 Introduction:

In a 1989 article, Wessely et al. [1] proposed a model of the onset and perpetuation of chronic fatigue syndrome, the illness often called myalgic encephalomyelitis and now frequently referred to as ME/CFS. In this model, patients’ symptoms were attributed to the effects of deconditioning following an acute illness. The symptoms were said to be perpetuated by patients’ persistent but purportedly unwarranted conviction that they continued to suffer from a medical disease that was exacerbated by exertion. The proposed treatment strategy combined gradual increases in activity to reverse the presumed deconditioning with efforts to alter patients’ supposedly misguided perceptions about their ailment.

ME/CFS has long been associated with marked disability and long-term sickness absences [2], with estimated rates of unemployment among patients ranging from 35% to 69% [3]. From the start, the promotion of behavioral and psychological rehabilitation has been intertwined with questions about whether ME/CFS patients with limited capacity to work should be able to receive some form of income or disability support. In a section on “sickness benefits” in the 1989 paper [1], the authors argued that decisions about social welfare payments should be linked to patients’ willingness to undergo behavioral and psychological interventions. “It is reasonable to expect a patient to cooperate with treatment before being labelled as chronically disabled,” noted the authors, notwithstanding the theoretical and unproven status of their model.

This rehabilitative approach achieved dominance over the next couple of decades, not only in the UK but in the US and many other countries. Graded exercise therapy (GET) and an illness-specific form of cognitive behavior therapy (CBT) became the predominant and most heavily researched ME/CFS interventions and were enshrined in multiple clinical guidelines. A 2005 review of the natural history of the illness [4], which found that only 5% of patients fully recovered spontaneously, noted “increasing evidence” for GET and CBT and therefore advised that “medical retirement should be postponed until a trial of such treatment has been given.”

While many studies have included employment status as a demographic data point [2, 3], fewer have specifically examined the relationship between GET and CBT and employment-related outcomes. Nonetheless, the results from the latter group are consistent and clear: The interventions do not lead to improved outcomes in employment status [5–13].

This question has taken on renewed urgency given the overlaps between ME/CFS and the phenomenon known as long Covid, or more formally as post-acute sequelae of SARS CoV-2 (PASC). A significant proportion of patients with prolonged symptoms after a coronavirus infection appear to suffer from the same cluster of symptoms that characterize ME/CFS, including pronounced exhaustion, relapses after minimal exertion known as post-exertional malaise (PEM), cognitive impairments, and orthostatic intolerance, among others. Like ME/CFS patients, many of this new PASC cohort have found that they are unable to sustain their previous level of employment. While the similarities between the two conditions have been widely noted by clinicians and medical investigators, they have also led to efforts to promote the traditional ME/CFS rehabilitation paradigm for this large wave of post-viral patients.

2 Employment outcomes in the PACE trial

After gaining momentum during the 1990 s and 2000 s, the GET/CBT approach was significantly reinforced with the 2011 publication in the Lancet of the first results of the PACE trial, the largest study of the two interventions for ME/CFS [5]. Additional PACE results were published in 2012 and 2013 [6, 7]. The study was partially funded by the UK’s Department for Work and Pensions (DWP). Officials at the agency presumably believed or hoped that the trial would provide robust data to support the use of these two strategies.

The PACE investigators presumably hoped for that as well; key members of the team maintained strong links with disability insurance companies, advising them that GET and CBT were effective in helping this group of challenging patients recover. In a 2002 essay for a UNUMProvident report on trends in disability [14], Michael Sharpe, a lead PACE investigator, wrote that “symptoms and disability” in patients with unexplained conditions “are shaped by psychological factors,” and in particular by “patients’ beliefs and fears.” He suggested that the promotion of biological disease models by ME/CFS patient advocates could impact health outcomes among insurance claimants.

Commenting on how public messaging and related “social factors” influenced the course of illness for these patients, Sharpe wrote: “Relevant factors include the information patients receive about the symptoms and how to cope with them. This information may be helpful or may stress the chronicity of the illness and promote helplessness. Such unhelpful information is found in “self-help” (!) books and increasingly on the Internet (see for example www.meassociation.org.uk)…Other social factors that perpetuate illness are anger with the person or organisation the illness is attributed to, or toward the insurer for not believing them.” In the article, Sharpe further argued that receiving financial benefits ultimately discouraged such claimants from getting better.

However, the data from PACE did not provide evidence that GET and CBT were effective in helping ME/CFS patients in the employment domain [6]. With 641 participants, PACE was the largest treatment trial for ME/CFS [5]. The investigators themselves referred to it as the “definitive” test of the two interventions [15]. In touting it as a success, they reported that around 60% had improved and 22% had recovered after treatment with GET and CBT, much more than in the other groups [5, 7]. However, these positive findings were all from subjective, self-reported measures. When such measures are paired with unblinded treatments, as in the PACE trial, they are subject to an unknown amount of bias.

PACE also included an employment measure as one of four objective outcomes, along with whether or not the participant was receiving social welfare or disability benefits, a step-test to assess fitness, and a six-minute-walking test. The results were uniformly poor. The first three measures produced null findings across the board, with no advantages conferred by the interventions [6, 7]; in the six-minute walking test, the GET group showed a statistically significant but clinically insignificant improvement [5]. In terms of employment, the percentage of participants in the GET group reporting lost days of work increased from 83% at baseline to 86% at 12 months after randomization; in the CBT group, the percentage was 84% both before and after treatment. In all study arms, the percentage of participants receiving unemployment or disability benefits was higher after treatment [6].

In promoting GET and CBT as effective, the PACE authors downplayed the findings on employment, receipt of disability or unemployment support, and other objective results, suggesting these should be ignored when determining whether patients had improved and recovered. In correspondence, they challenged the reliability and even the objectivity of the measures they themselves had pre-designated as objective. As they wrote: “Recovery from illness is a health status, not an economic one, and plenty of working people are unwell, while well people do not necessarily work. Some of our participants were either past the age of retirement or were not in paid employment when they fell ill. In addition, follow-up at 6 months after the end of therapy may be too short a period to affect either benefits or employment.” [16].

It is indisputable that other factors besides health status play a role in employment outcomes. Nonetheless, if the PACE trial’s reported results of significant improvement and recovery were accurate, then a measurable benefit from GET and CBT in employment and in the receipt of financial support would have been expected. As has been well-documented, the investigators weakened key subjective outcome measures in ways that dramatically improved their reported results; published re-analyses of trial data have found that no one achieved “recovery” from either of the therapies, and rates of improvement were so marginal that they were likely due to bias and expectation effects [17, 18]. Given these findings, the similarly disappointing results for employment outcomes in PACE should not be surprising.

3 Other studies on CBT/GET and employment outcomes

In a review of treatment studies that included employment outcomes, Vink and Vink-Niese [8] found that the standard interventions did not have an overall positive effect on work status. Besides PACE, among the studies reviewed were two other randomized trials and five observational studies based on data from clinical services. The two other trials, one in the Netherlands with 278 participants and one in England with 153, both investigated CBT and reported no statistically significant differences in employment outcomes between the intervention and control groups [9, 10]. The largest observational study included 952 patients seeking care at specialty clinics in England, although a great many did not provide post-treatment outcomes; among a subgroup of 394, 18% reported having returned to work or increased work hours, while 30% reported having stopped work or reduced work hours [11]. According to a Belgian report, a review of 655 patients attending domestic clinics found that “employment status decreased” when assessed after treatment while the percentage of those “living from a sickness allowance” rose from 54% to 57% [12].

Other observational research had similarly unpromising findings. In the most recent study, Stevelink et al. [13], of 508 patients who attended clinical services between 2007 and 2014, only 316 provided information about post-treatment employment status, among other measures. Of those, 9% had returned to work after not having worked at baseline. On the other hand, 6% had stopped working after having been working at baseline, leaving a net return-to-work after treatment of just 3%–a handful of people. Moreover, that figure is likely to be overstated, given the high loss-to-follow-up from the initial sample of 508. The drop-outs were more seriously ill at baseline, so they might be expected to have worse employment outcomes than those who ended up providing data at the final time point.

According to the authors, “unhelpful beliefs such as fear of activity and exercise and concerns about causing damage, combined with all or nothing behaviour and behavioural avoidance, were associated with not working” [13]. This statement is problematic because “fear of activity,” “concerns about causing damage” and related indications of caution should be considered reasonable and prudent perspectives, not “unhelpful beliefs,” among patients with the core ME/CFS symptom of PEM. Beyond that, the study itself documented little or no change after treatment in the domains of “fear-avoidance,” “catastrophizing,” “embarrassment avoidance,” “symptom focusing,” “all-or-nothing behaviour,” and “avoidance/resting behaviour,” even though such factors were “specifically targeted in CBT and, to some extent, GET.”

Moreover, the authors reported no change in subjective fatigue scores, and only a marginal increase in subjective physical function scores, with participants remaining seriously disabled even after treatment. Thus, although the authors noted correctly that “meaningful occupation is important for well-being and psychosocial needs,” their study documented that their approach failed to impact factors presumed to be essential to helping participants achieve that important goal. (Since Stevelink et al’s senior author was one of the lead PACE investigators, it is unclear why the paper did not mention the null employment results from that “definitive” study.)

The theoretical illness model underlying all of these studies is essentially the one outlined by Wessely et al. more than three decades ago [1]. That illness model is at odds with the extensive physiological abnormalities that have been found in ME/CFS [17, 19]. Research findings have also undermined two core assumptions of the model–specifically, that ME/CFS patients are deconditioned and have an unwarranted fear of activity or exercise. [20–22]. In 2017, the US Centers for Disease Control and Prevention dropped its recommendations for GET and CBT as ME/CFS treatments. In 2021, the UK National Institute for Health and Care Excellence (NICE) reversed its earlier support for the interventions in new ME/CFS guidelines; in its analysis, NICE assessed the quality of the evidence supporting GET and CBT as either “very low” or merely “low” [23]. These developments are consistent with the failure of GET and CBT to lead to improved employment outcomes in PACE and other studies.

4 Conclusion

In a recent study of employment status among clinic attendees, Stevelink et al. [13] wrote that “work-related outcomes should be targeted” in treatment for ME/CFS. It is certain that people with ME/CFS experience disrupted occupational lives and that it would be desirable to identify treatments that could restore their full capacity for employment. However, the most common behavioral and psychological interventions— that is, GET and CBT–have already been tested sufficiently to reach a conclusive assessment that they do not lead overall to meaningful improvements in work status. These poor results are consistent across randomized trials, including the high-profile and “definitive” PACE study, as well as observational studies of patients seeking clinical services for their illness.

Some investigators and medical experts continue to promote GET and CBT as treatments for ME/CFS patients based on subjective findings from flawed studies. They also seek to extend these recommendations to patients with long Covid, or PASC, many of whom are receiving ME/CFS diagnoses and facing employment challenges. It is time to state the obvious: The objective data on work outcomes indicate that GET and CBT do not lead to readily apparent benefits in this domain. In consequence, they should no longer be recommended to ME/CFS patients as a strategy for achieving occupational rehabilitation and related benefits.

Source: Tuller D, Vink M. Graded exercise therapy and cognitive behavior therapy do not improve employment outcomes in ME/CFS. Work. 2023 Mar 10. doi: 10.3233/WOR-220569. Epub ahead of print. PMID: 36911962. https://content.iospress.com/articles/work/wor220569 (Full text)

Characteristics associated with physical functioning and fatigue in patients with chronic fatigue syndrome (CFS): secondary analyses of a randomized controlled trial

Abstract

Objective: This study aimed to explore associations at the group level between patient characteristics at baseline and the outcomes of physical functioning and fatigue in patients with chronic fatigue syndrome (CFS) participating in a randomized controlled trial on cognitive behavioural therapy (CBT).

Methods/design: Consecutively, 236 adult participants fulfilling the Centres for Disease Control and Prevention (CDC) 1994 criteria for CFS were randomly allocated to either 16 weeks of standard CBT, 8 weeks of Interpersonal CBT or a treatment as usual control group. In secondary analyses we investigated how gender, age, pain, anxiety, depression, memory and VO2max at baseline were associated with physical function and fatigue before and after treatment, controlling for the CBT-interventions and the baseline levels of the outcome measures.

For the two groups receiving CBT, a 1-year follow-up analysis was also done. Bivariate and multivariable linear regression was used to explore the targeted associations.

Results: At baseline, less pain (p < .001) and higher VO2max (p = 0.014) were associated with better physical function, while better memory (p = 0.001) and fewer depressive symptoms (p = 0.017) were associated with less fatigue. Better memory and physical function at baseline (p = 0.015 and p < .001, respectively) and male gender (p = 0.003) were associated with higher physical function post-intervention.

Male gender (p = 0.010) was associated with higher physical function at 1-year follow-up. Fatigue severity at baseline was the only variable associated with follow up scores for fatigue (p < .001).

Conclusion: Our findings show that fatigue and physical function were associated with different types of characteristics at baseline, indicating a heterogeneity among CFS patients.

Source: Merethe Eide Gotaas, Tormod Landmark, Anne S. Helvik & Egil A. Fors (2023) Characteristics associated with physical functioning and fatigue in patients with chronic fatigue syndrome (CFS): secondary analyses of a randomized controlled trial, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2023.2175521 https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2175521 (Full text)

Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of chronic fatigue syndrome: a population-based study in Taiwan

Abstract:

Objective: An increased prevalence of psychiatric comorbidities (including depression and anxiety disorder) has been observed among patients with chronic fatigue syndrome (CFS). However, few studies have examined the presence of depression and anxiety disorder before the diagnosis of CFS. This study aimed to clarify the preexisting comorbidities and treatments associated with patients with subsequent CFS diagnosis in a population-based cohort in Taiwan.

Methods: An analysis utilizing the National Health Insurance Research Database of Taiwan was conducted. Participants included were 6303 patients with CFS newly diagnosed between 2000 and 2010 and 6303 age-/sex-matched controls.

Results: Compared with the control group, the CFS group had a higher prevalence of depression and anxiety disorder before the diagnosis of CFS. Sampled patients who took specific types of antidepressants, namely, selective serotonin reuptake inhibitors (adjusted odds ratio [aOR] = 1.21, 95% confidence interval [CI] 1.04-1.39), serotonin antagonists and reuptake inhibitors (SARI; aOR = 1.87, 95% CI 1.59-2.19), and tricyclic antidepressants (aOR = 1.46, 95% CI 1.09-1.95), had an increased risk of CFS. CFS risk was also higher among participants taking benzodiazepine, muscle relaxants, and analgesic drugs.

A sub-group analysis revealed that SARI use was related to an increased risk of CFS in the depression, anxiety disorder, male, and female groups. In the depression and anxiety disorder groups, analgesic drug use was associated with an increased CFS risk. Nonpharmacological treatment administration differed between men and women.

Conclusion: This population-based retrospective cohort study revealed an increased risk of CFS among populations with preexisting depression and anxiety disorder, especially those taking SARI and analgesic drugs.

Source: Chen C, Yip HT, Leong KH, Yao WC, Hung CL, Su CH, Kuo CF, Tsai SY. Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of chronic fatigue syndrome: a population-based study in Taiwan. J Transl Med. 2023 Feb 8;21(1):98. doi: 10.1186/s12967-023-03886-1. PMID: 36755267; PMCID: PMC9907887. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9907887/ (Full text)

The emotional well-being of Long COVID patients in relation to their symptoms, social support and stigmatization in social and health services: a qualitative study

Abstract:

Background: Long COVID patients have experienced a decline in their quality of life due to, in part but not wholly, its negative emotional impact. Some of the most prevalent mental health symptoms presented by long COVID patients are anxiety, depression, and sleep disorders. As such, the need has arisen to analyze the personal experiences of these patients to understand how they are managing their daily lives while dealing with the condition. The objective of this study is to increase understanding about the emotional well-being of people diagnosed with long COVID.

Methods: A qualitative design was created and carried out using 35 patients, with 17 participants being interviewed individually and 18 of them taking part in two focus groups. The participating patients were recruited in November and December 2021 from Primary Health Care (PHC) centers in the city of Zaragoza (Northern Spain) and from the Association of Long COVID Patients in Aragon. The study topics were emotional well-being, social support networks, and experience of discrimination. All an inductive thematic content analyses were performed iteratively using NVivo software.

Results: The Long COVID patients identified low levels of self-perceived well-being due to their persistent symptoms, as well as limitations in their daily lives that had been persistent for many months. Suicidal thoughts were also mentioned by several patients. They referred to anguish and anxiety about the future as well as a fear of reinfection or relapse and returning to work. Many of the participants reported that they have sought the help of a mental health professional. Most participants identified discriminatory situations in health care.

Conclusions: It is necessary to continue researching the impact that Long COVID has had on mental health, as well as to provide Primary Health Care professionals with evidence that can guide the emotional treatment of these patients.

Source: Samper-Pardo M, Oliván-Blázquez B, Magallón-Botaya R, Méndez-López F, Bartolomé-Moreno C, León-Herrera S. The emotional well-being of Long COVID patients in relation to their symptoms, social support and stigmatization in social and health services: a qualitative study. BMC Psychiatry. 2023 Jan 25;23(1):68. doi: 10.1186/s12888-022-04497-8. PMID: 36698111; PMCID: PMC9875186. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9875186/ (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)

Psychological consequences of long COVID: comparing trajectories of depressive and anxiety symptoms before and after contracting SARS-CoV-2 between matched long- and short-COVID groups

Abstract:

Background: There is a growing global awareness of the psychological consequences of long COVID, supported by emerging empirical evidence. However, the emergence and long-term trajectories of psychological symptoms following the infection are still unclear.

Aims: To examine when psychological symptoms first emerge following infection with SARS-CoV-2 and the long-term trajectories of psychological symptoms comparing long- and short-COVID groups.

Method: We analysed longitudinal data from the UCL COVID-19 Social Study (March 2020 to November 2021). We included data from adults living in England who reported contracting SARS-CoV-2 by November 2021 (n = 3115). Of these, 15.9% reported having had long COVID (n = 495). They were matched to participants who had short COVID using propensity score matching on a variety of demographic, socioeconomic and health covariates (n = 962 individuals with 13 325 observations) and data were further analysed using growth curve modelling.

Results: Depressive and anxiety symptoms increased immediately following the onset of infection in both long- and short-COVID groups. But the long-COVID group had substantially greater initial increases in depressive symptoms and heightened levels over 22 months follow-up. Initial increases in anxiety were not significantly different between groups, but only the short-COVID group experienced an improvement in anxiety over follow-up, leading to widening differences between groups.

Conclusions: The findings support work on the psychobiological pathways involved in the development of psychological symptoms relating to long COVID. The results highlight the need for monitoring of mental health and provision of adequate support to be interwoven with diagnosis and treatment of the physical consequences of long COVID.

Source: Fancourt D, Steptoe A, Bu F. Psychological consequences of long COVID: comparing trajectories of depressive and anxiety symptoms before and after contracting SARS-CoV-2 between matched long- and short-COVID groups. Br J Psychiatry. 2022 Dec 2:1-8. doi: 10.1192/bjp.2022.155. Epub ahead of print. PMID: 36458509. https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/psychological-consequences-of-long-covid-comparing-trajectories-of-depressive-and-anxiety-symptoms-before-and-after-contracting-sarscov2-between-matched-long-and-shortcovid-groups/923140B3F95F1158C0CDC188002531AE (Full text)

Psychogenic Explanations of Physical Illness: Time to Examine the Evidence

Abstract:

In some patients with chronic physical complaints, detailed examination fails to reveal a well-recognized underlying disease process. In this situation, the physician may suspect a psychological cause. In this review, we critically evaluated the evidence for this causal claim, focusing on complaints presenting as neurological disorders.

There were four main conclusions. First, patients with these complaints frequently exhibit psychopathology but not consistently more often than patients with a comparable “organic” diagnosis, so a causal role cannot be inferred.

Second, these patients report a high incidence of adverse life experiences, but again, there is insufficient evidence to indicate a causal role for any particular type of experience.

Third, although psychogenic illnesses are believed to be more responsive to psychological interventions than comparable “organic” illnesses, there is currently no evidence to support this claim.

Finally, recent evidence suggests that biological and physical factors play a much greater causal role in these illnesses than previously believed. We conclude that there is currently little evidential support for psychogenic theories of illness in the neurological domain. In future research, researchers need to take a wider view concerning the etiology of these illnesses.

Source: Carolyn E. Wilshire and Tony Ward. Psychogenic Explanations of Physical Illness: Time to Examine the Evidence. Perspectives on Psychological Science 2016, Vol. 11(5) 606–631. https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence (Full text)

Experiences of carers of youth, adult children and spouses with ME/CFS

Abstract:

Objectives: The debilitating nature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) means that family members often take on a caring role. This study compared the experiences of people caring for three groups: youth, young adults, spouses.

Methods: An opportunistic sample of 36 carers completed an online survey of open-ended questions asking about their experiences. Thematic analysis was used to consider the three sets of responses separately and Thematic Comparison was used to identify points of connection and disconnection across the sets.

Results: The themes identified were very similar to those identified in past studies. Two super-ordinate themes were identified: “Lack of knowledge and understanding” and “Holistic Impact”. Though most sub-ordinate themes were evident across all three groups, important differences were found. The sub-ordinate themes “Caring Blindly”, “Emotional and physical health cost”, and “Impact on the whole family” were more evident amongst carers of youth while the theme “Worry for the future” was more evident from carers of young adults and spouses.

Discussion: Differences seemed to be related to both the time since diagnosis and the life stage. A longitudinal study would help to understand how carer experiences change over the life course of caring for someone with ME/CFS.

Source: Baken DM, Ross KJ, Hodges LD, Batten L. Experiences of carers of youth, adult children and spouses with ME/CFS. Chronic Illn. 2022 Oct 18:17423953221121696. doi: 10.1177/17423953221121696. Epub ahead of print. PMID: 36259126. https://pubmed.ncbi.nlm.nih.gov/36259126/

Grief in Chronic Illness: A Case Study of CFS/ME

Abstract:

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief.

I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study.

I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake in clinical practice.

Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated.

I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve.

Source: Byrne, Eleanor Alexandra. Grief in Chronic Illness: A Case Study of CFS/ME. Journal of Consciousness Studies, Volume 29, Numbers 9-10, September 2022, pp. 175-200(26). https://www.ingentaconnect.com/contentone/imp/jcs/2022/00000029/f0020009/art00009

Towards a critical psychology of chronic fatigue syndrome: Biopsychosocial narratives and UK welfare reform

Abstract:

Chronic fatigue syndrome, understood as per (bio) psychosocial discourse, is a political construction, serving actors and structures associated with welfare reform, to the detriment of patients.

The condition typically known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, disabling condition characterised by post-exertional malaise, often accompanied by cognitive impairment, pain, sleep disturbance, gastro-intestinal and autonomic dysfunction (Goudsmit et al., 2009). ME/CFS is positioned as having multifactorial aetiology, including a genetic predisposition, precipitated by viral, bacterial and parasitic infection, toxins and stress, perpetuated through neuro-immune and metabolic dysfunction (Cortes Rivera et al., 2019). The dominant conceptualisation of ME/CFS in UK healthcare, generated through a biopsychosocial model with a cognitivebehavioural focus, is that of a psychosocial entity which, whilst possibly precipitated by a virus or other stressor, is perpetuated by ‘maladaptive’ illness beliefs, fear-avoidance behaviours, and social reinforcement (Sharpe et al., 1997; Deary et al., 2007; Harvey & Wessely, 2009). This conceptualisation has been critiqued for lacking empirical support.

Read the rest of this article HERE.

Source: Hunt, Joanne. Towards a critical psychology of chronic fatigue syndrome: Biopsychosocial narratives and UK welfare reform. Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 22, No. 1, 18-28  https://www.researchgate.net/publication/361017759_Towards_a_critical_psychology_of_chronic_fatigue_syndrome_Biopsychosocial_narratives_and_UK_welfare_reform (Full text)