Tag: social support

A systematic scoping review of how people with ME/CFS use the internet

Abstract:

Purpose: Myalgic Encephalomyelitis (ME) is a chronic neurological illness also known as Chronic Fatigue Syndrome (CFS). Key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other conditions, more knowledge of characteristics and experience of online use in everyday life is needed. This scoping review systematically identified, appraised and synthesised what is known on how people with ME/CFS use the internet.

Method: The following bibliographic databases were searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations & Theses Global, Scopus, and Google Scholar for grey literature. Two reviewers independently screened title-abstracts, and full text of studies against inclusion criteria. Remaining studies were quality-assessed using appropriate critical appraisal tools.

Results: Many people with ME/CFS go online daily to gain information and share experiences of their illness including difficulties with family, friends and doctors. Reciprocity of emotional and social support was found with a sense of in-group belonging and empowerment. Validation was sought online, and identity renegotiation took place. Some replacement of offline social support for online engagement was reported. Online lay expertise was seen to improve offline health professional relations but not replace them.

Conclusions: The internet is a valued source of support for people with ME/CFS in terms of sharing of experiences, legitimacy, empowerment, and integration into people’s everyday lives. The extent of interrelating of online and offline lives is not clear however and needs further investigation.

Source: Diane Shortland, Qulsom Fazil, Anna Lavis & Nutmeg Hallett (2024) A systematic scoping review of how people with ME/CFS use the internet, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2024.2303887  (Full text)

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study.

Abstract:

Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID share some clinical and social characteristics. We predicted that this would lead to an increased interaction between pre-pandemic members of a ME/CFS online support community and a long COVID community.

We performed a mixed-methods retrospective observational study of the Reddit activity of 7,544 users active on Reddit’s long COVID forum. From among 1600 forums, pre-pandemic activity specifically on a ME/CFS forum is the top predictor of later participation on the long COVID forum versus an acute COVID support forum.

In the qualitative portion, motives for this co-participation included seeking mutual support and dual identification with both conditions. Some of this effect may be explained by pre-existing ME/CFS possibly being a risk factor for long COVID and/or SARS-CoV-2 infection being a cause of ME/CFS relapse. The high rate of ME/CFS patients seeking mutual support on a long COVID forum speaks to the long-suffering experience of these patients not feeling heard or respected, and the hope of some ME/CFS patients to gain legitimacy through the public’s growing recognition of long COVID.

Source: William U Meyerson, Rick H Hoyle. Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study. medRxiv 2023.06.30.23292087; doi: https://doi.org/10.1101/2023.06.30.23292087 https://www.medrxiv.org/content/10.1101/2023.06.30.23292087v1 9 (Full text available as PDF file)

Social support, distress and well-being in individuals experiencing Long-COVID: a cross-sectional survey study

Abstract:

Objectives: Increasingly attention of the COVID-19 pandemic is directed towards its long-term effects, also known as Long-COVID. So far, Long-COVID was examined mainly from a medical perspective, leaving psychosocial effects of Long-COVID understudied. The present study advances the current literature by examining social support in the context of Long-COVID. The study not only examines received support reported by individuals with Long-COVID, but also provided support reported by relatives of individuals with Long-COVID.

Design: Cross-sectional study.

Setting: The study was conducted from June to October 2021 in Austria, Germany and the German-speaking part of Switzerland.

Participants: We examined 256 individuals with Long-COVID (MAge=45.05 years, 90.2% women) and 50 relatives of individuals with Long-COVID (MAge=48.34 years, 66.1% female) in two separate online surveys, assessing social support, well-being and distress.

Primary outcome measures: Primary outcomes were positive and negative affect, anxiety and depressive symptoms and perceived stress.

Results: For individuals with Long-COVID, receiving emotional support was related to higher well-being (positive affect: b=0.29, p<0.01; negative affect: b=-0.31, p<0.05) and less distress (anxiety: b=-1.45, p<0.01; depressive symptoms: b=-1.04, p<0.05; perceived stress: b=-0.21, p<0.05) but no effects emerged for receiving practical support. For relatives of individuals with Long-COVID, providing emotional support was only related to lower depressive symptoms (b=-2.57, p<0.05). Again, provided practical support was unrelated to the outcomes considered.

Conclusions: Emotional support is likely to play an important role in well-being and distress of patients and relatives, whereas practical support does not seem to make a difference. Future research should clarify under what conditions different kinds of support unfold their positive effects on well-being and distress in the context of Long-COVID.

Source: Lüscher J, Scholz U, Bierbauer W. Social support, distress and well-being in individuals experiencing Long-COVID: a cross-sectional survey study. BMJ Open. 2023 Mar 22;13(3):e067166. doi: 10.1136/bmjopen-2022-067166. PMID: 36948566; PMCID: PMC10039976. https://bmjopen.bmj.com/content/13/3/e067166 (Full text)

Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review

Highlights:

• Co-produced peer support can help people living with Long COVID.
• Increasing the use of effective peer support may reduce health inequalities.
• Inclusive peer support can benefit ‘hardly reached’ Long Covid cohorts.
• Linking biomedical, relational and socio-political styles are most effective.

Abstract:

Since the first wave of COVID-19 in March 2020 the number of people living with post-COVID syndrome has risen rapidly at global pace, however, questions still remain as to whether there is a hidden cohort of sufferers not accessing mainstream clinics. This group are likely to be constituted by already marginalised people at the sharp end of existing health inequalities and not accessing formal clinics. The challenge of supporting such patients includes the question of how best to organise and facilitate different forms of support.

As such, we aim to examine whether peer support is a potential option for hidden or hardly reached populations of long COVID sufferers with a specific focus on the UK, though not exclusively. Through a systematic hermeneutic literature review of peer support in other conditions (57 papers), we evaluate the global potential of peer support for the ongoing needs of people living with long COVID.

Through our analysis, we highlight three key peer support perspectives in healthcare reflecting particular theoretical perspectives, goals, and understandings of what is ‘good health’, we call these: biomedical (disease control/management), relational (intersubjective mutual support) and socio-political (advocacy, campaigning & social context). Additionally, we identify three broad models for delivering peer support: service-led, community-based and social media. Attention to power relations, social and cultural capital, and a co-design approach are key when developing peer support services for disadvantaged and underserved groups.

Models from other long-term conditions suggest that peer support for long COVID can and should go beyond biomedical goals and harness the power of relational support and collective advocacy. This may be particularly important when seeking to reduce health inequalities and improve access for a potentially hidden cohort of sufferers.

Source: Mullard JCR, Kawalek J, Parkin A, Rayner C, Mir G, Sivan M, Greenhalgh T. Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review. Soc Sci Med. 2023 Jan 14:115669. doi: 10.1016/j.socscimed.2023.115669. Epub ahead of print. PMCID: PMC9840228. https://www.sciencedirect.com/science/article/pii/S0277953623000242 (Full text)

The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families

Abstract:

Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents’ experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools.

This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non-specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non-ME/CFS medical professionals were recruited from the same region.

Semi-structured qualitative interviews and focus groups were undertaken. Participants’ views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11-17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed.

Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three-way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures.

In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them.

Source: Clery P, Linney C, Parslow R, Starbuck J, Laffan A, Leveret J, Crawley E. The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families. Health Soc Care Community. 2022 Aug 22. doi: 10.1111/hsc.13942. Epub ahead of print. PMID: 35996850. https://onlinelibrary.wiley.com/doi/10.1111/hsc.13942 (Full text)

Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract:

Objective: To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the lens of Communities of Practice.

Methods: A closed Facebook group was created to gather qualitative data from participants diagnosed with CFS/ME (n = 22). Data were analysed using a theoretical thematic analysis.

Results: The current research revealed the reality of enabling and disabling communities in the lived experience of CFS/ME and the role of participation in developing empowered identities. Learning how to be alongside CFS/ME aligned with participants’ experiences of purpose and meaning. New identities may be developed which are not centrally defined by loss or stigma.

Discussion: Participation in supportive communities enables CFS/ME identities to emerge as a platform for positive change. Engaging with the CFS/ME virtual community may be a way for both families and health professionals to reflect on current practice.

Source: Murray R, Turner L. Using Communities of Practice Theory to Understand the Crisis of Identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Chronic Illn. 2021 Dec 6:17423953211064989. doi: 10.1177/17423953211064989. Epub ahead of print. PMID: 34866419. https://journals.sagepub.com/doi/10.1177/17423953211064989 (Full text)

Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support

Abstract:

Objective: Chronic fatigue syndrome (CFS) patients report limited social support, which can affect symptom severity. Friends are a key source of social support for young adults with CFS, but there is limited research on friends’ responses to the CFS label. We explored the potential benefits or harms of the CFS label for shaping the potential for social support from a friend’s perspective.

Method: 207 university students responded to hypothetical scenarios about a close friend experiencing CFS. Participants were randomly allocated to either the CFS-label or no-label conditions. The potential for social support was operationalised as attitude (sympathetic or hostile), intended treatment support and intended behavioural support.

Results: The CFS label elicited a greater potential for social support, with significantly higher sympathetic responses, lower rejecting responses and greater support for active treatment. These effects were significantly greater in men compared to women. There was no effect on intended behavioural support.

Conclusion: This study suggests the CFS label may increase the potential for social support. Young adults, particularly men, held more supportive attitudes towards their friend when the CFS label was used.

Practical Implications: The effects of labels on the potential for social support need to be considered when evaluating the usefulness of a disease label.

Source: Noble S, Bonner C, Hersch J, Jansen J, McGeechan K, McCaffery K. Could disease labelling have positive effects? An experimental study exploring the effect of the chronic fatigue syndrome label on intended social support. Patient Educ Couns. 2018 Oct 15. pii: S0738-3991(18)30883-8. doi: 10.1016/j.pec.2018.10.011. [Epub ahead of print]  https://www.ncbi.nlm.nih.gov/pubmed/30514660

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome.

Abstract:

Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians.

This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self-reported diagnosis of ME or CFS. Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others.

In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.

Source: McManimen SL, McClellan D, Stoothoff J, Jason LA. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. J Community Psychol. 2018 Nov;46(8):959-971. doi: 10.1002/jcop.21984. Epub 2018 May 4. https://www.ncbi.nlm.nih.gov/pubmed/30311972

Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses

Abstract:

Living with a chronic illness can be challenging, but the ability to derive benefits and grow from this experience may enhance well-being. However, the possibility of obtaining such benefits may be dependent on the levels of stigmatization and lack of social support experienced by an individual as a result of the illness.

Chronic fatigue syndrome (CFS) and fibromyalgia are chronic conditions that remain largely unexplained and those with these conditions must often contend with stigma and skepticism from others. Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development.

The present study demonstrated that women with CFS/fibromyalgia (n = 40) as well as community participants who were depressed/anxious (n = 37), reported higher stigma levels than healthy women (n = 33). Moreover, women with CFS/fibromyalgia and those with depression/anxiety also reported greater levels of stigma than women with a chronic yet more widely accepted condition (n = 35; rheumatoid arthritis, osteoarthritis and multiple sclerosis).

Secrecy related to stigma among those with CFS/fibromyalgia declined with increased social support, but this was not apparent among those with other chronic conditions. In addition, posttraumatic growth was lower among women with CFS/fibromyalgia compared to those with other chronic conditions.

Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others. However, women with CFS/fibromyalgia tended to report less positive change regarding interpersonal relationships compared to women with other chronic conditions.

In general, unexplained illnesses were also accompanied by stigmatization which might ultimately contribute to women’s lower ability to derive positive growth from their illness experience.

 

Source: McInnis OA, McQuaid RJ, Bombay A, Matheson K, Anisman H. Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses. Stress. 2015;18(2):169-77. doi: 10.3109/10253890.2014.1001975. Epub 2015 Jan 23. https://www.ncbi.nlm.nih.gov/pubmed/25544022

 

Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study

Abstract:

OBJECTIVES: To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums.

DESIGN: Observational study

SETTING: Norway, which has more than 80% household coverage in internet access, September 2009

PARTICIPANTS: Twelve Norwegian disorder-related online discussion forums

MAIN OUTCOME MEASURES: Number of registered users and number of posted messages on each discussion forum

RESULTS: Two forums were targeted towards individuals with CFS/ME. These forums had the highest number of registered users per estimated 1,000 cases in the population (50.5 per 1,000 and 29.7 per 1,000), followed by a site for drug dependency (5.4 per 1,000). Counting the number of posted messages per 1,000 cases gave similar indications of high online activity in the CFS/ME discussion forums.

CONCLUSIONS: CFS/ME online forums had more than ten times the relative activity of any other disorder or condition related forum. This high level of activity may have multiple explanations. Individuals suffering from a stigmatized condition of unknown aetiology may use the internet to look for explanations of symptoms or to seek out alternative treatments. Internet forum activity may also be reinforced by the creation of in-group identity and pre-morbid personality traits. More knowledge on the type and quality of information provided in online forums is urgently needed.

 

Source: Knudsen A, Lervik L, Harvey S, Løvvik C, Omenås A, Mykletun A. Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study. JRSM Short Rep. 2012 May;3(5):32. doi: 10.1258/shorts.2011.011167. Epub 2012 May 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365790/ (Full article)