trauma – American ME and CFS Society

Post-Traumatic Stress Disorder and Complex Post-Traumatic Stress Disorder in people with long COVID, ME/CFS, and controls

Abstract:

Background: Prevalences of Post-Traumatic Stress Disorder (PTSD) and Complex Post-Traumatic Stress Disorder (CPTSD) have not previously been compared between individuals with long COVID and individuals with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), and healthy age-matched controls. For these reasons, this study aimed to determine the prevalence of PTSD and CPTSD in individuals with long COVID (n=21) and ME/CFS (n=20) and age-matched controls (n=20).

Methods: A case-case-control approach was employed, participants completed the International Trauma Questionnaire (ITQ), a self-report measure of the International Classification of Diseases (ICD-11) of PTSD and CPTSD consisting of 18 items. Scores were calculated for each PTSD and Disturbances in Self-Organization (DSO) symptom cluster and summed to produce PTSD and DSO scores. PTSD was diagnosed if the criteria for PTSD were met but not DSO, and CPTSD was diagnosed if the criteria for PTSD and DSO were met. Moreover, each cluster of PTSD and DSO were compared among individuals with long COVID, ME/CFS and healthy controls.

Results: Individuals with long COVID (PTSD= 5%, CPTSD= 33%) had more prevalence of PTSD and CPTSD than individuals with ME/CFS (PTSD= 0%, CPTSD= 20%) and healthy controls (PTSD= 0%, CPTSD= 0%). PTSD and CPTSD prevalence was greater in individuals with long COVID and ME/CFS than controls. Individuals with long COVID had greater values controls for all PTSD values. Moreover, individuals with long COVID had greater values than controls for all DSO values. Individuals with ME/CFS had greater values than controls for all DSO values. Both long COVID and ME/CFS groups differed in overall symptom scores compared to controls.

Conclusion: Findings of this study demonstrated that individuals with long COVID generally had more cases of PTSD and CPTSD than individuals with ME/CFS and healthy controls.

Source: Sanal-Hayes NEM, Hayes LD, Mclaughlin M, Berry ECJ, Sculthorpe NF. Post-Traumatic Stress Disorder and Complex Post-Traumatic Stress Disorder in people with long COVID, ME/CFS, and controls. Am J Med. 2023 Dec 15:S0002-9343(23)00756-8. doi: 10.1016/j.amjmed.2023.12.006. Epub ahead of print. PMID: 38104642. https://pubmed.ncbi.nlm.nih.gov/38104642/

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/

Differential effects of childhood trauma subtypes on fatigue and physical functioning in chronic fatigue syndrome

Abstract:

OBJECTIVE: There is wide consensus that childhood trauma plays an important role in the aetiology of chronic fatigue syndrome (CFS). The current study examines the differential effects of childhood trauma subtypes on fatigue and physical functioning in individuals suffering from CFS.

METHODS: Participants were 155 well-documented adult, predominantly female CFS patients receiving treatment at the outpatient treatment centre for CFS of the Antwerp University Hospital in Belgium. Stepwise regression analyses were conducted with outcomes of the total score of the Checklist Individual Strength (CIS) measuring fatigue and the scores on the physical functioning subscale of the Medical Outcomes Short Form 36 Health Status Survey (SF-36) as the dependent variables, and the scores on the five subscales of the Traumatic Experiences Checklist (TEC) as the independent variables.

RESULTS: The patients’ fatigue (β=1.38; p=0.025) and physical functioning scores (β=-1.79; p=0.034) were significantly predicted by childhood sexual harassment. There were no significant effects of emotional neglect, emotional abuse, bodily threat, or sexual abuse during childhood.

CONCLUSION: Of the childhood trauma subtypes investigated, sexual harassment emerged as the most important predictor of fatigue and poor physical functioning in the CFS patients assessed. These findings have to be taken into account in further clinical research and in the assessment and treatment of individuals coping with chronic fatigue syndrome.

Source: De Venter M, Illegems J, Van Royen R, Moorkens G, Sabbe BGC, Van Den Eede F. Differential effects of childhood trauma subtypes on fatigue and physical functioning in chronic fatigue syndrome.Compr Psychiatry. 2017 Jul 19;78:76-82. doi: 10.1016/j.comppsych.2017.07.006. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/28806608

The relationship between posttraumatic stress disorder, illness cognitions, defence styles, fatigue severity and psychological well-being in chronic fatigue syndrome

Abstract:

This study investigated, firstly, the rate of posttraumatic stress disorder (PTSD) and the level of psychological well-being amongst people with chronic fatigue syndrome (CFS); and secondly, the extent to which illness cognitions, defence styles and PTSD symptom severity related to fatigue severity and psychological well-being.

Seventy-eight participants with a diagnosis of CFS completed the Chalder Fatigue Scale, the General Health Questionnaire-28, the Posttraumatic Stress Diagnostic Scale, the Illness Cognition Questionnaire and the Defence Style Questionnaire. Fifty-nine participants were recruited from the general public to form the non-fatigued control group.

CFS participants had significantly higher levels of PTSD symptoms, lower levels of psychological well-being and more traumatic life events compared to the non-fatigued controls. Trauma exposure and PTSD severity both predicted CFS status. However, regression analyses demonstrated no significant relationship between PTSD symptoms and fatigue severity or the degree of psychological well-being. ‘Helplessness’ predicted both physical and mental fatigue and psychological well-being, whilst the ‘mature’ defence styles predicted fatigue severity only.

The results offer support to previous research showing that the rate of traumatic life events and PTSD are significantly higher amongst the CFS population. The lack of relationship between PTSD symptoms and fatigue severity or psychological well-being indicates that these processes may operate independently of one another, via different appraisal processes. This study focused on fatigue severity, but it may be that the role of pain in CFS is a key element in the previously reported association between PTSD and CFS.

Source: Eglinton R, Chung MC. The relationship between posttraumatic stress disorder, illness cognitions, defence styles, fatigue severity and psychological well-being in chronic fatigue syndrome. Psychiatry Res. 2011 Jul 30;188(2):245-52. doi: 10.1016/j.psychres.2011.04.012. Epub 2011 May 19. https://www.ncbi.nlm.nih.gov/pubmed/21600664

Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study

Abstract:

CONTEXT: Chronic fatigue syndrome (CFS) is an important public health problem. The causes of CFS are unknown and effective prevention strategies remain elusive. A growing literature suggests that early adverse experience increases the risk for a range of negative health outcomes, including fatiguing illnesses. Identification of developmental risk factors for CFS is critical to inform pathophysiological research and devise targets for primary prevention.

OBJECTIVE: To examine the relationship between early adverse experience and risk for CFS in a population-based sample of clinically confirmed CFS cases and nonfatigued control subjects.

DESIGN, SETTING, AND PARTICIPANTS: A case-control study of 43 cases with current CFS and 60 nonfatigued controls identified from a general population sample of 56 146 adult residents from Wichita, Kan.

MAIN OUTCOME MEASURES: Self-reported childhood trauma (sexual, physical, and emotional abuse and emotional and physical neglect) and psychopathology (depression, anxiety, and posttraumatic stress disorder) by CFS status.

RESULTS: The CFS cases reported significantly higher levels of childhood trauma and psychopathology compared with the controls. Exposure to childhood trauma was associated with a 3- to 8-fold increased risk for CFS across different trauma types. There was a graded relationship between the degree of trauma exposure and CFS risk. Childhood trauma was associated with greater CFS symptom severity and with symptoms of depression, anxiety, and posttraumatic stress disorder. The risk for CFS conveyed by childhood trauma increased with the presence of concurrent psychopathology.

CONCLUSIONS: This study provides evidence of increased levels of multiple types of childhood trauma in a population-based sample of clinically confirmed CFS cases compared with nonfatigued controls. Our results suggest that childhood trauma is an important risk factor for CFS. This risk was in part associated with altered emotional state. Studies scrutinizing the psychological and neurobiological mechanisms that translate childhood adversity into CFS risk may provide direct targets for the early prevention of CFS.

Source: Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF, Unger ER, Reeves WC. Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study. Arch Gen Psychiatry. 2006 Nov;63(11):1258-66. https://www.ncbi.nlm.nih.gov/pubmed/17088506

Fibromyalgia, chronic fatigue syndrome, and myofascial pain

Abstract:

The prevalence of fibromyalgia in the general population was found to be 2% and increased with age. Multiple traumatic factors, including sexual and physical abuse, may be important initiating events. The most important pathophysiologic studies in fibromyalgia included evidence of altered blood flow to the brain and hypothalamic-pituitary-adrenal dysfunction. The prevalence of chronic fatigue syndrome is much less than that of fibromyalgia. Epidemiologic studies demonstrated that chronic fatigue and symptoms of fibromyalgia are distributed as continuous variables in the general population. No association between chronic fatigue and initial infections was seen in primary care practices.

Source: Goldenberg DL. Fibromyalgia, chronic fatigue syndrome, and myofascial pain. Curr Opin Rheumatol. 1996 Mar;8(2):113-23. http://www.ncbi.nlm.nih.gov/pubmed/8732795