Narratives of change in recovery from severe fatigue - a qualitative study on stories of healing from severe chronic fatigue syndrome/myalgic encephalomyelitis

Bakken, Anne Karen; Mengshoel, A.; Synnes, O.; Strand, E.

doi:10.1016/j.jpsychores.2022.110820

Cited by 2 publications

(6 citation statements)

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“…In the medical context, individuals with contested conditions like ME/CFS may be met with rejection, disbelief, or a lack of comprehension from healthcare practitioners 39 . They often feel socially devalued by medical scepticism that questions the legitimacy of their symptoms and experiences 23,40,41 . Participants reported experiencing this type of stigmatisation, which then precipitated unproductive, dismissive or discouraging interactions with clinicians.…”

Section: Discussionmentioning

confidence: 99%

“…39 They often feel socially devalued by medical scepticism that questions the legitimacy of their symptoms and experiences. 23,40,41 Research shows that supportive online communities for individuals living with chronic illnesses can foster personal empowerment and provide validation, 44 and individuals diagnosed with ME/CFS are particularly active in online support groups. 45,46 Active members of ME/CFS support groups report greater symptom severity and less improvement than those who leave such groups, which may indicate a movement away from the patient community when symptoms of ME/CFS are less active.…”

Section: Experience Explanation Quotementioning

confidence: 99%

“…9 Participants in our study who tried interventions that conflicted with community knowledge about ME/CFS were often reluctant to share their recovery narratives in online communities for fear of being ostracised or dismissed; oftentimes, these conflicts arose around mindbody approaches, which some ME/CFS patients reject because it does not fit their logic model of illness. 23 For example, those who believe that ME/CFS is caused by underlying biological processes may hold that mind/behaviour interventions will be ineffective. Of note, a recently published narrative study exploring recovery from CFS/ME also found support for mind-body approaches.…”

Section: Experience Explanation Quotementioning

confidence: 99%

“…Due to the complexity of the condition and conflicting scientific literature, healthcare providers are challenged to provide clear guidance on how to live with, and potentially recover from, an already stigmatised illness 21 . Most therapies focus on achieving symptom improvement and managing the patient's physical, emotional, and cognitive capacities for living with a chronic illness 22,23 . Treatment evidence and guidelines are varied, as some recommend mind‐body interventions (e.g., cognitive behavioural therapy) and graduated exercise therapy 24 while others do not 4 .…”

Section: Introductionmentioning

confidence: 99%

“…and managing the patient's physical, emotional, and cognitive capacities for living with a chronic illness. 22,23 Treatment evidence and guidelines are varied, as some recommend mind-body interventions (e.g., cognitive behavioural therapy) and graduated exercise therapy 24 while others do not. 4 It is not uncommon for patients to respond to this lack of medical support by identifying their own therapies and interventions, often pursuing multiple interventions in the hope of symptom alleviation; many patients report identifying potential treatments online, from other patients, or through alternative practitioners.…”

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confidence: 99%

See 4 more Smart Citations

Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study

Hasan,

Kuyvenhoven,

Chowdhury

et al. 2023

Evaluation Clinical Practice

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Aims and ObjectivesMyalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long‐term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.MethodInterpretive description study consisting of semi‐structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.ResultsTwenty‐six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind‐body approaches.ConclusionPatients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.

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Section: Discussionmentioning

confidence: 99%