A large number of published studies have come to light this week. This is s selection from them. We shall publish more in our Friday summary next week.
From Archives of Disease in Childhood Online (open access), 19 January 2017.
Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents
Tom Norris (1,2), Simon M Collin (1,2), Kate Tilling(2), Roberto Nuevo(3),
Stephen A Stansfeld(4), Jonathan AC Sterne(2), Jon Heron(2), Esther Crawley(1,2).
1) Centre for Child and Adolescent Health, University of Bristol, Bristol, UK
2) School of Social & Community Medicine, University of Bristol, Bristol, UK
3) CIBER Epidemiología y Salud Pública (CIBERESP), Instituto de Salud Carlos III, Madrid, Spain
4) Wolfson Institute of Preventive Medicine, Queen Mary University of London, UK
Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents. Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.
Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children. Setting Avon, UK.
We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.
The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16. Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.
The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.
From E-Cronicon Neurology (open access), 19 December 2016.
Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis
Diana Ohanian, Abigail Brown, Madison Sunnquist, Jacob Furst, Laura Nicholson, Lauren Klebek and Leonard A Jason*
DePaul University, Chicago, USA
Correspondence: Leonard A Jason, DePaul Unicversity, Chicago, USA
It is unclear what key symptoms differentiate Myalgic Encephalomyelitis (ME) and Chronic Fatigue syndrome (CFS) from Multiple Sclerosis (MS).
The current study compared self-report symptom data of patients with ME or CFS with those with MS. The self-report data is from the DePaul Symptom Questionnaire, and participants were recruited to take the questionnaire online.
Data were analyzed using a machine learning technique called decision trees. Five symptoms best differentiated the groups.
The best discriminating symptoms were from the immune domain (i.e., flu-like symptoms and tender lymph nodes), and the trees correctly categorized MS from ME or CFS 81.2% of the time, with those with ME or CFS having more severe symptoms.
Our findings support the use of machine learning to further explore the unique nature of these different chronic diseases.
From BMJ Open, 13 January 2017
Children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies
Roxanne M Parslow(1), Sarah Harris(2), Jessica Broughton(2), Adla Alattas(1), Esther Crawley(1), Kirstie Haywood(3), Alison Shaw(4)
1) Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK
2) Department of Psychology, University of Bath, Bath, UK
3) Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick, Health Sciences, Coventry, UK
4) Centre for Primary Care Research, School of Social & Community Medicine, University of Bristol, Bristol, UK
Correspondence: Roxanne M Parslow; firstname.lastname@example.org
To synthesisE the qualitative studies of children’s experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
Systematic review and meta-ethnography.
CFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children.
Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography.
Ten studies involving 82 children with CFS/ME aged 8–18 were included. Our synthesis describes four third-order constructs within children’s experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children’s ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness.
Physical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition and diagnosis of childhood CFS/ME, specialist advice on activity management and improved communication between health and education providers to help children cope with their condition.
From Journal of Neurology and Neurobiology, 10 January 2017.
Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported
Family Physician, Soerabaja Research Center, Amsterdam, The Netherlands
*Corresponding author: Mark Vink, Family Physician, Soerabaja Research Center, Amsterdam, the Netherlands, E-mail: email@example.com
The PACE trial concluded that Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) are moderately effective in managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and yielded a 22% recovery rate. Nonetheless, the recently released individual participant data shows that 13.3% of patients had already recovered, on one or both primary outcomes, upon entering the trial. Moreover, no one classified as recovered achieved the physical functioning, together with the fatigue scores, of the healthy sedentary controls from another trial by the PACE trial‘s lead principal investigator or achieved Kennedy‘s definition of recovery, whereby symptoms are eliminated and patients return to premorbid levels of functioning, due to CBT or GET (alone). Therefore, CBT and GET do not lead to actual recovery.
After CBT and GET therapy, 59% and 61% of participants, respectively were labeled as improvers in the original paper, which was lowered by the PACE trial authors to 20% and 21% in the newly released papers in which they used the original protocol; nevertheless, only 3.7% and 6.3% were objective improvers in the objective 6-minute walk test as defined by the same improvement of 50% or more, as used by the trial itself, to classify someone as an improver. If the effect of Specialist Medical Care had been removed from the analysis, then 0% and 1.3% of patients improved objectively with CBT and GET, respectively. Highlighting the fact that unblinded trials like the PACE trial, should not rely on subjective primary outcomes, but use either objective primary outcomes alone, or combined with subjective primary outcomes, as a methodological safeguard against the erroneous inference of efficacy in its absence.
The objective individual participant data shows that in up to 82.2% and 79.8% of ME patients their health might have been negatively affected by CBT and GET, respectively. The independent PACE trial review had shown that this proportion was between 46% and 96%, and found to be between 63% and 74% by surveys involving more than 3000 patients by the Norwegian, British, and the Dutch ME Associations. These data confirm the conclusions of a number of studies that patient health was negatively affected by CBT and GET, including one that found that in 82% of patients with severe ME their symptoms were made worse by GET. Analysis of the individual participant PACE trial data has shown that CBT and GET are ineffective and (potentially) harmful, which invalidates the assumption and opinion-based biopsychosocial model. Consequently, we should stop using CBT and GET as (compulsory) treatments for ME/ CFS to prevent further unnecessary suffering inflicted on patients by physicians, which is the worst of all harms, yet totally preventable.