Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study

Highlights:

  • First time study on mental health and well-being among ME/CFS patients in Switzerland.
  • High level (68.5%) of stigmatization reported due to ME/CFS.
  • Overall, ME/CFS led to a third of the patients and to half of the male patients to have suicidal thoughts.
  • ME/CFS led to secondary depression in 14.8% of the patients.
  • Lack of disease recognition and adequate patient support.

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating chronic disease of significant public health and clinical importance. It affects multiple systems in the body and has neuro-immunological characteristics. The disease is characterized by a prominent symptom called post-exertional malaise (PEM), as well as abnormalities in the immune-inflammatory pathways, mitochondrial dysfunctions and disturbances in neuroendocrine pathways. The purpose of this study was to evaluate the impact of ME/CFS on the mental health and secondary psychosocial manifestations of patients, as well as their coping mechanisms.

Method: In 2021, a descriptive cross-sectional study was conducted in Switzerland. A self-administered paper questionnaire survey was used to gather data from 169 individuals diagnosed with ME/CFS.

Results: The majority of the patients (90.5%) reported a lack of understanding of their disease, resulting in patients avoiding talking about the disease due to disbelief, trivialization and avoidance of negative reactions. They felt most supported by close family members (67.1%). Two thirds of the patients (68.5%) experienced stigmatization. ME/CFS had a negative impact on mental health in most patients (88.2%), leading to sadness (71%), hopelessness for relief (66.9%), suicidal thoughts (39.3%) and secondary depression (14.8%). Half of the male patients experienced at least one suicidal thought since clinical onset. Factors significantly associated with depression were the lack of cure, disabilities associated with ME/CFS, social isolation and the fact that life was not worth anymore with ME/CFS. The three main factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%), (ii) being at the end of one’s strength (80.7%) and (iii) not feeling being understood by others (80.7%).

Conclusion: This study provided first time significant insights into the mental and psychological well-being of ME/CFS patients in Switzerland. The findings highlight the substantial experiences of stigmatization, secondary depression and suicidal thoughts compared to other chronic diseases, calling for an urgent need in Switzerland to improve ME/CFS patient’s medical, psychological and social support, in order to alleviate the severe mental health burden associated with this overlooked somatic disease.

Source: Rahel Susanne König, Daniel Henry Paris, Marc Sollberger, Rea Tschopp.  Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study, HELIYON (2024), doi: https:// doi.org/10.1016/j.heliyon.2024.e27031. https://www.sciencedirect.com/science/article/pii/S2405844024030627 (Full text)

Prevalence of mental health problems among children with long COVID: A systematic review and meta-analysis

Abstract:

Introduction: The number of children with mental health problems has more than doubled since the COVID-19 pandemic. However, the effect of long Covid on children’s mental health is still debatable. Recognising long Covid as a risk factor for mental health problems in children will increase awareness and screening for mental health problems following COVID-19 infection, resulting in earlier intervention and lower morbidity. Therefore, this study aimed to determine the proportion of mental health problems post-COVID-19 infection in children and adolescents, and to compare them with the population with no previous COVID-19 infection.

Methodology: A systematic search was done in seven databases using pre-defined search terms. Cross-sectional, cohort and interventional studies reporting the proportion of mental health problems among children with long COVID in the English language from 2019 to May 2022 were included. Selection of papers, extraction of data and quality assessment were done independently by two reviewers. Studies with satisfactory quality were included in meta-analysis using R and Revman software programmes.

Results: The initial search retrieved 1848 studies. After screening, 13 studies were included in the quality assessments. Meta-analysis showed children who had previous COVID-19 infection had more than two times higher odds of having anxiety or depression, and 14% higher odds of having appetite problems, compared to children with no previous infection. The pooled prevalence of mental health problems among the population were as follows; anxiety: 9%(95% CI:1, 23), depression: 15%(95% CI:0.4, 47), concentration problems: 6%(95% CI: 3, 11), sleep problems: 9%(95% CI:5, 13), mood swings: 13% (95%CI:5, 23) and appetite loss: 5%(95% CI:1, 13). However, studies were heterogenous and lack data from low- and middle-income countries.

Conclusion: Anxiety, depression and appetite problems were significantly increased among post-COVID-19 infected children, compared to those without a previous infection, which may be attributed to long COVID. The findings underscore the importance of screening and early intervention of children post-COVID-19 infection at one month and between three to four months.

Source: Mat Hassan N, Salim HS, Amaran S, Yunus NI, Yusof NA, Daud N, et al. (2023) Prevalence of mental health problems among children with long COVID: A systematic review and meta-analysis. PLoS ONE 18(5): e0282538. https://doi.org/10.1371/journal.pone.0282538 https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0282538 (Full text)

The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it. Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led to sobering results.
According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS. Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help.
In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.
Source: Grande T, Grande B, Gerner P, Hammer S, Stingl M, Vink M, Hughes BM. The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Medicina. 2023; 59(4):719. https://doi.org/10.3390/medicina59040719 (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)

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)

Pale rider: the Spanish flu of 1918 and how it changed the world

Book Review:

Pale rider: The Spanish Flu of 1918 and How it Changed the World by Laura Spinney, Public Affairs; 1st edition (September 12, 2017)

Formerly Professor of Psychiatry, Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India

The COVID-19 pandemic has changed life for humanity, nothing is “normal” anymore! In the last 100 years, there has not been any similar event. The common feeling among professionals, planners, press, politicians, and people is that “life will not be the same as we knew it, after the pandemic.” Understanding the likely impact of the pandemic and its consequences would be valuable to humanity in general and mental health professionals in particular. Against this current world-shaking event, it is natural to look for similar events in human history. In this, the 1918 flu is the closest event to understand a variety of aspects of the current pandemic. The book, Pale Rider: The Spanish Flu of 1918 and how it changed the world, is one of the best books in this field.[1] That many people are looking at the 1918 flu can be seen by the number of articles in the lay press that have focused on the 1918 flu.[2],[3],[4],[5],[6],[7] Even now, a new book was published as latest as July 23, 2020.[8],[9]

Nevertheless, the book, under review, has 21 chapters with attractive chapter titles such as Like a Thief in the Night; The Doctor’s Dilemma; The Wrath of God; Chalking Doors with Crosses; Good Samaritans; The Human Factor; The Green Shoots of Recovery; Alternate Histories; and Health Care for all and Melancholy Muse.

Between the first case recorded on March 4, 1918, and the last case sometime in March 1920, it killed 50–100 million people, or between 2.5% and 5% of the global population. In terms of a single event causing major loss of life, it surpassed the First World War (17 million dead) and the Second World War (60 million dead). India was specially affected and lost around 6% of its population, the greatest loss in absolute numbers of any country in the world (an estimate of 13–18 million). The book has a special focus on India,[1] presented through the lives of Mahatma Gandhi, Tagore, Munshi Premchand, and Nirala and its impact on the Independence struggle.

Mahatma Gandhi was affected by the gastric variety of flu. At Gandhi’s ashram, several prominent members of the Independence Movement were laid low with flu. Gandhi was too feverish to speak or read; he couldn’t shake a sense of doom: “All interest in living had ceased.” Interestingly, Gandhi’s reaction was: This protracted and first long illness in my life thus afforded me a unique opportunity to examine my principles and to test them. Rabindranath Tagore returned his knighthood as a reaction to the Jallianwala Bagh massacre, and observed that British were guilty of “the same kind of ignorance of the eternal laws which primitive people show when they hunt for some so-called witch to whom they ascribe the cause of their illness, while carrying the disease germs in their own blood.” Spinney observes that disease was a major preoccupation in the writing that emerged in the 1920s, where it dovetailed with ideas about the need to reform the caste system and throw off the yoke of British rule. Munshi Premchand became the self-styled “chronicler of village life” around 1918 when he was living in the United Provinces (Uttar Pradesh), where the Spanish flu claimed an estimated 2–3 million lives alone. Also living there at that time was the poet Nirala, who lost his wife and many other members of his family to the flu. He later recalled seeing the River Ganges “swollen with dead bodies.” This was the strangest time in my life. My family disappeared in the blink of an eye.

There are sections in the book describing the feelings of anxiety accompanying the acute phase of the disease, and reports of people killing themselves while delirious. Following recovery, some patients found themselves plunged into a lingering state of lassitude and despair. Norwegian epidemiologist Svenn-Erik Mamelund studied asylum records in his country from 1872 to 1929 and found that, every year, in which there was no pandemic of influenza, only a few cases were admitted of mental illness associated with flu. However, in each of the 6 years following the 1918 pandemic, the average number of such admissions was seven times higher than in those nonpandemic years (emphasis added). Mamelund speculates that the patients admitted in those 6 years were survivors of Spanish flu who were suffering from what today we would call “postviral or chronic fatigue syndrome.”

The book provides similar creative responses in a number of countries following the pandemic. The paragraph about controversies about the quarantine makes for contemporary reading: “Quarantine and other disease containment strategies place the interests of the collective over those of the individual. When the collective is very large, those strategies have to be imposed in a top-down fashion. But mandating a central authority to act in the interests of the collective potentially creates two kinds of problems. First, the collective may have competing priorities-the need to make money, or the need to raise an army-and deny or water-down the authority’s powers of enforcement. Second, the rights of individuals risk getting trampled on, especially if the authority abuses the measures placed at its disposal.”

One of the quotes from the book can portend what we can expect in the coming years in the country. Spinney notes, “The 1918 pandemic accelerated the pace of change in the first half of the twentieth century, and helped shape our modern world. It influenced the course of the First World War and arguably, contributed to the Second. It pushed India closer to Independence, South Africa closer to Apartheid, and Switzerland to the brink of Civil War. It ushered in universal healthcare and alternative medicine, our love of fresh air and our passion for sport, and it was probably responsible, at least in part, for the obsession of twentieth-century artists with all the myriad ways in which the human body can fail.”

The book made me realize that the current pandemic will bring about extensive changes. Against this expected “mental health tsunami,” there are three tasks for each one of us: firstly, to document the experiences of individuals, families, communities, and the government; secondly, to identify the social factors contributing to vulnerabilities and resilience, to guide corrective actions; and lastly, to utilize the opportunity of heightened awareness of societal-level issues, to work toward addressing the predisposing causes for higher mortality and morbidity such as inequalities, intolerances, inadequate health infrastructure, the weak welfare network to support the vulnerable, and decentralization of powers and plans to enhance community participation.

I recommend it as an essential reading during the current pandemic period.

Source: Murthy R S. Pale rider: the spanish flu of 1918 and how it changed the world. Indian J Soc Psychiatry [serial online] 2020 [cited 2022 Jul 4];36, Suppl S1:189-90. Available from: https://www.indjsp.org/text.asp?2020/36/5/189/297158

The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract:

This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.

Source: Boulazreg S, Rokach A. The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2020 Oct 20;8(4):E413. doi: 10.3390/healthcare8040413. PMID: 33092097. https://pubmed.ncbi.nlm.nih.gov/33092097/

Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis

Abstract:

PURPOSE: An accommodative coping style (e.g. acceptance) is related to a better mental health-related quality of life (MHQL) in patients with chronic fatigue syndrome (CFS). We want to explore whether neuroticism is predictive for this coping style and MHQL. Secondly we want to explore the relation between acceptance and physical health-related quality of life (PHQL) and expect that illness-related variables such as fatigue severity and duration are related to PHQL.

METHOD: In this cross-sectional study, 117 patients with chronic fatigue syndrome from an outpatient internal medicine clinic completed self-report questionnaires on quality of life (SF-36), acceptance (ICQ), personality traits (NEO-FFI) and fatigue severity (CIS).

RESULTS: Regression analyses showed that neuroticism and acceptance are predictors of MHQL (38% of the variance was explained). The path analysis showed that acceptance mediates between neuroticism and MHQL and that PHQL is related to MHQL. PHQL is related to fatigue severity and duration, but not to neuroticism and acceptance.

CONCLUSION: Stimulating an ‘accepting accommodative coping style’ within the treatment for CFS is important in improving mental quality of life. Our results suggest that neuroticism may be negatively related to acceptance and MHQL. This findings support the idea that a psychological diagnostic workout with special attention to personality traits in relation to their coping style is recommended in order to choose the most appropriate therapeutic approach in this population.

 

Source: Poppe C, Crombez G, Hanoulle I, Vogelaers D, Petrovic M. Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis. Qual Life Res. 2012 Oct;21(8):1337-45. doi: 10.1007/s11136-011-0048-8. Epub 2011 Oct 29. https://www.ncbi.nlm.nih.gov/pubmed/22038396

 

Functional status in patients with chronic fatigue syndrome, other fatiguing illnesses, and healthy individuals

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a condition that may be associated with substantial disability. The Medical Outcomes Study Short-Form General Health Survey (SF-36) is an instrument that has been widely used in outpatient populations to determine functional status. Our objectives were to describe the usefulness of the SF-36 in CFS patients and to determine if subscale scores could distinguish patients with CFS from subjects with unexplained chronic fatigue (CF), major depression (MD), or acute infectious mononucleosis (AIM), and from healthy control subjects (HC). An additional goal was to ascertain if subscale scores correlated with the signs and symptoms of CFS or the presence of psychiatric disorders and fibromyalgia.

DESIGN: Prospectively collected case series.

SETTING: Patients with CFS and CF were seen in a university-based referral clinic and had undergone a complete medical and psychiatric evaluation. Other study subjects were recruited from the community to participate in research studies.

PARTICIPANTS: The study included 185 patients with CFS, 246 with CF, 111 with AIM, and 25 with MD. There were 99 HC subjects.

MEASURES: The SF-36 and a structured psychiatric interview were used. The SF-36 contains 8 subscales: physical, emotional, social, and role functioning, body pain, mental health, vitality, and general health- and a structured psychiatric interview.

RESULTS: Performance characteristics (internal reliability coefficients, convergent validity) of the SF-36 were excellent. A strikingly consistent pattern was found for the physical functioning, role functioning, social functioning, general health, and body pain subscales, with the lowest scores in CFS patients, intermediate scores in AIM patients, and the highest scores in the HC subjects. The CFS patients had significantly lower scores than patients with CF alone on the physical functioning (P < or = 0.01), role functioning (P < or = 0.01), and body pain (P < or = 0.001) subscales. The emotional functioning and mental health scores were worst among those with MD. The presence of fibromyalgia, being unemployed, and increasing fatigue severity all were associated with additional functional limitations across multiple functional domains, with increasing fatigue appearing to have the greatest effect.

CONCLUSIONS: The SF-36 is useful in assessing functional status in patients with fatiguing illnesses. Patients with CFS and CF have marked impairment of their functional status. The severity and pattern of impairment as documented by the SF-36 distinguishes patients with CFS and CF from those with MD and AIM, and from HC, but does not discriminate between CF and CFS.

 

Source: Buchwald D, Pearlman T, Umali J, Schmaling K, Katon W. Functional status in patients with chronic fatigue syndrome, other fatiguing illnesses, and healthy individuals. Am J Med. 1996 Oct;101(4):364-70. http://www.ncbi.nlm.nih.gov/pubmed/8873506