family dynamics – American ME and CFS Society

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/

Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey

Abstract:

Objectives: The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).

Design: A patient-partner, multinational, subject-initiated, cross-sectional online survey.

Setting: International survey using ME/CFS charities, support groups and social media.

Participants: Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18-81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18-87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.

Interventions: EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.

Results: The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.

Conclusions: To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.

Source: Vyas J, Muirhead N, Singh R, Ephgrave R, Finlay AY. Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey. BMJ Open. 2022 May 2;12(5):e058128. doi: 10.1136/bmjopen-2021-058128. PMID: 35501074. https://bmjopen.bmj.com/content/12/5/e058128 (Full text)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

Abstract:

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments.

Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire.

Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores.

Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

Source: Brittain E, Muirhead N, Finlay AY, Vyas J. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members. Medicina (Kaunas). 2021 Jan 7;57(1):E43. doi: 10.3390/medicina57010043. PMID: 33430175. https://www.mdpi.com/1010-660X/57/1/43 (Full text)

Brief report: The accuracy of parents for the thoughts and feelings of their adolescent suffering from chronic fatigue: a preliminary study of empathy

Abstract:

OBJECTIVE: This study examined the actual and estimated empathic accuracy (EA) of the parents of adolescents with chronic fatigue syndrome(CFS).

METHODS: The actual EA of both parents (n = 24) was assessed in relation to the thoughts and feelings of their child (n = 14) about CFS and about other life events. Adolescents were also asked to estimate the parents’ EA.

RESULTS: For the actual EA, both parents were significantly less accurate regarding the adolescent’s thoughts and feelings about CFS than about other life events. Fathers were just as empathically accurate as mothers. For the estimated EA, however, results indicated that adolescents perceived their mother to be more empathically accurate than their father. Actual EA and estimated EA about CFS were negatively correlated for fathers, not for mothers.

CONCLUSIONS: Results are discussed in terms of the importance of assessing EA in relation to other dimensions of empathic understanding and distress in the observer.

Source: Vervoort T, Crombez G, Buysse A, Goubert L, Backer TD, Ickes W. Brief report: The accuracy of parents for the thoughts and feelings of their adolescent suffering from chronic fatigue: a preliminary study of empathy. J Pediatr Psychol. 2007 May;32(4):494-9. Epub 2006 Sep 29. http://jpepsy.oxfordjournals.org/content/32/4/494.long (Full article)

Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood

Abstract:

OBJECTIVE: To compare family health and characteristics in children with chronic fatigue syndrome (CFS), in juvenile rheumatoid arthritis (JRA), and emotional disorders.

METHOD: Parents of 28 children and adolescents aged 11 to 18 years with CFS, 30 with JRA, and 27 with emotional disorders (i.e., anxiety and/or depressive disorders) were recruited from specialty clinical settings and completed interviews and questionnaires assessing family health problems, parental mental distress, illness attitudes, and family burden of illness.

RESULTS: Parents of children with CFS were significantly more likely than those of children with JRA to report a history of CFS-like illness, high levels of mental distress, and a tendency to experience functional impairment in response to physical symptoms. Families of children with CFS were characterized by significantly greater emotional involvement and reported greater family burden related to the child’s illness in comparison with families of children with JRA.

CONCLUSIONS: CFS in childhood and adolescence is associated with higher levels of parental CFS-like illness, mental distress, emotional involvement, and family illness burden than those observed in association with JRA, a chronic pediatric physical illness.

Source: Rangel L, Garralda ME, Jeffs J, Rose G. Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood. J Am Acad Child Adolesc Psychiatry. 2005 Feb;44(2):150-8. http://www.ncbi.nlm.nih.gov/pubmed/15689728

Childhood experiences of illness and parenting in adults with chronic fatigue syndrome

Abstract:

OBJECTIVE: There are many similarities between chronic fatigue syndrome (CFS), the somatoform disorders and problems otherwise known as “medically unexplained symptoms.” There is some evidence to suggest that a combination of inadequate parenting and early illness experience may predispose the individual to develop medically unexplained symptoms in adult life. The aim of this investigation was to compare the contributions of childhood experiences of illness and parenting in adults with CFS with a fracture clinic control group.

METHOD: A retrospective case control design was used. Thirty patients with a diagnosis of CFS and 30 patients attending a fracture clinic in an inner London teaching hospital completed questionnaires measuring parental care and protection and were interviewed about childhood experiences of illness.

RESULTS: There were no differences in childhood experience of illness in the two groups. However, logistic regression revealed that maternal overprotection and depression were associated with the diagnosis of CFS.

CONCLUSION: The findings may represent risk factors for the development of CFS in adult life. It is possible that maternal overprotection in particular is related to the formation of belief systems about avoiding activity that operate to adversely influence behaviour in patients with CFS.

Source: Fisher L, Chalder T. Childhood experiences of illness and parenting in adults with chronic fatigue syndrome. J Psychosom Res. 2003 May;54(5):439-43. http://www.ncbi.nlm.nih.gov/pubmed/12726900

Caring for a relative with chronic fatigue syndrome: difficulties, cognition and acceptance over time

Abstract:

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present.

Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness.

In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

Source: Ax S, Gregg VH, Jones D. Caring for a relative with chronic fatigue syndrome: difficulties, cognition and acceptance over time. J R Soc Promot Health. 2002 Mar;122(1):35-42. http://www.ncbi.nlm.nih.gov/pubmed/11989141

The effects on siblings in families with a child with chronic fatigue syndrome

Abstract:

Paediatric CFS/ME is a stressor, which affects not only the sufferer but also the whole family. The sibling bond exerts a great influence on all the children in the family. Healthy siblings are often overlooked as attention is focused on the child with CFS/ME or other chronic illness. Individual children react in different ways to serious illness in another sibling by adopting a variety of coping mechanisms. There is a need for health and education professionals to consider the whole family when caring for and working with a child with CFS/ME.

Source: Jackson EL. The effects on siblings in families with a child with chronic fatigue syndrome. J Child Health Care. 1999 Summer;3(2):27-32. http://www.ncbi.nlm.nih.gov/pubmed/10451339