Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

Devendorf, Andrew; Jackson, Carly; Sunnquist, Madison; Jason, Leonard A.

doi:10.1080/09638288.2017.1383518

Cited by 21 publications

(32 citation statements)

References 37 publications

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“…Parents suggested a return to functioning at pre-morbid levels or at the level of peers would signify recovery. This is consistent with attempts to characterise recovery as being a return to population norms, equivalent to physician-held views 11. Previous research on adult patient’s recovery stories in CFS/ME drew on comparisons between themselves currently and themselves prior to the illness or peers 35.…”

Section: Discussionsupporting

confidence: 68%

“…It is difficult to define recovery in CFS/ME as the condition affects multiple dimensions including symptoms, physical activity, social participation (including school) and emotional well-being 10. Improvements can be therefore be measured in physical, psychosocial functioning and daily activities, making it problematic to define recovery in terms of either symptoms or function 11 12. Some randomised controlled trials have defined recovery as improvement in multiple domains, others as a return to normal within one domain 13.…”

Section: Introductionmentioning

confidence: 99%

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Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland

Parslow

Anderson

et al. 2019

bmjpo

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ObjectivesChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.MethodsChildren with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.ResultsTwenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.ConclusionSome parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

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Section: Discussionsupporting

confidence: 68%

Section: Introductionmentioning

confidence: 99%

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland

Parslow

Anderson

et al. 2019

bmjpo

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“…If so, this may partly explain modest benefits found in clinical trials. However, we observe that recovery is operationally defined by IAPT in a way that will not resemble how most MUS patients understand recoveryfor instance, recovery from chronic back pain should mean much reduced or non-existent back pain, rather than less depression or anxiety [69].…”

Section: Discussionmentioning

confidence: 87%

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Geraghty

Scott²

2020

BMC Psychol

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Background: Improving Access to Psychological Therapies is a UK Government funded initiative to widen access to psychological treatment for a range of common mental health complaints, such as depression and anxiety. More recently, the service has begun to treat patients with medically unexplained symptoms. This paper reports on a review of treatment protocols and early treatment data for medically unexplained symptoms, specifically the illness myalgic encephalomyelitis/chronic fatigue syndrome. Main text: A series of seven core problems and failings are identified, including an unproven treatment rationale, a weak and contested evidence-base, biases in treatment promotion, exaggeration of recovery claims, underreporting of drop-out rates, and a significant risk of misdiagnosis and inappropriate treatment. Conclusions: There is a pressing need for independent oversight of this service, specifically evaluation of service performance and methods used to collect and report treatment outcomes. This service offers uniform psychobehavioural therapy that may not meet the needs of many patients with medically unexplained health complaints. Psychotherapy should not become a default when patients' physical symptoms remain unexplained, and patients should be fully informed of the rationale behind psychotherapy, before agreeing to take part. Patients who reject psychotherapy or do not meet selection criteria should be offered appropriate medical and psychological support.

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“…The name, chronic fatigue syndrome, has had a huge impact on the medical, scientific and patient communities-how it is viewed and how patients are treated by the medical profession [163]. That together with the fact that most ME/CFS patients look well and have no outward signs of illness, combined with the lack of training in medical school and during post graduate education, means that many doctors are not aware of the severity of ME/CFS [164] or that 25% are too ill to leave their homes [53]. Nor are they aware of the fact that the quality of life in ME/CFS is worse than in other severe illnesses like MS, lung cancer, chronic renal failure or stroke [165].…”

Section: Discussionmentioning

confidence: 99%

“…In clinical trials of ME/CFS, the term recovery often reflects less than full restoration of health. A more appropriate and accurate label for this would be clinically significant improvement [164]. However, it's not only clinical trials that suffer from this problem.…”

Section: What Can Be Expected If a Patient Is Diagnosed With Me/cfs?mentioning

confidence: 99%

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

Vink¹,

Vink-Niese

2019

Diagnostics

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do. However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.

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Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective

Cited by 21 publications

References 37 publications

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

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