Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy

Author(s):  
Rachel A. Ankeny ◽  
Fiona J. Mackenzie
2008 ◽  
Vol 64 (4) ◽  
pp. 351-355 ◽  
Author(s):  
Hyong Jin Cho ◽  
Paulo Rossi Menezes ◽  
Dinesh Bhugra ◽  
Simon Wessely

2020 ◽  
Author(s):  
Emma Anderson ◽  
Roxanne Parslow ◽  
William Hollingworth ◽  
Nicola Mills ◽  
Lucy Beasant ◽  
...  

BACKGROUND Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment. OBJECTIVE This study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial). METHODS This study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments. RESULTS A total of 89 out of 150 (59.3% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported. CONCLUSIONS Recruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment. CLINICALTRIAL ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 INTERNATIONAL REGISTERED REPORT RR2-10.1186/s13063-018-2500-3


10.2196/17768 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e17768
Author(s):  
Emma Anderson ◽  
Roxanne Parslow ◽  
William Hollingworth ◽  
Nicola Mills ◽  
Lucy Beasant ◽  
...  

Background Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment. Objective This study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial). Methods This study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments. Results A total of 89 out of 150 (59.3% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported. Conclusions Recruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment. Trial Registration ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 International Registered Report Identifier (IRRID) RR2-10.1186/s13063-018-2500-3


1999 ◽  
Vol 97 (3) ◽  
pp. 319 ◽  
Author(s):  
D.A. DUPREZ ◽  
M.L. DE BUYZERE ◽  
B. DRIEGHE ◽  
F. VANHAVERBEKE ◽  
Y. TAES ◽  
...  

2017 ◽  
Vol 33 (3) ◽  
pp. 158-165
Author(s):  
Natalia Calvo ◽  
Naia Sáez-Francàs ◽  
Sergi Valero ◽  
Jesús Castro-Marrero ◽  
José Alegre Martín ◽  
...  

Abstract. The study examines the relationship between a categorical and a dimensional personality assessment instrument in patients with Chronic Fatigue Syndrome (CFS). A total of 162 CFS patients were included in the study (91.4% women; mean age 47.5 years). All subjects completed the Spanish versions of the Personality Diagnostic Questionnaire-4+ (PDQ-4+) and the Temperament and Character Inventory-Revised (TCI-R). Results: 78 (48.1%) of the patients presented a Personality Disorder (PD), the most frequent being Cluster C, specifically Obsessive-compulsive disorder, followed by Avoidant disorder. PDs showed a specific pattern of correlation with temperament scales. All PD clusters correlated positively with Harm Avoidance and Self-Transcendence, and negatively with Reward Dependence, Self-Directedness, and Cooperativeness. In a logistic regression analysis, Self-Directedness and Cooperativeness predicted PD presence. The findings are consistent with previous studies in non-CFS samples and suggest that the combination of the Temperament and Character dimensions (low Self-Directedness and Cooperativeness and high Harm Avoidance and Self-Transcendence) correlates with PD severity, and that Self-Directedness and Cooperativeness are associated with PD presence in CFS patients. The integration of these two perspectives expands the current comprehension of personality pathology in CFS patients.


1997 ◽  
Vol 52 (9) ◽  
pp. 973-983 ◽  
Author(s):  
Leonard A. Jason ◽  
Judith A. Richman ◽  
Fred Friedberg ◽  
Lynne Wagner ◽  
Renee Taylor ◽  
...  

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