Tag Archives: children

Developing & pretesting a new patient reported outcome measure for paediatric CFS/ME

Posted on November 18, 2019 by wames

Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): cognitive interviews with children, by Roxanne M. Parslow, Alison Shaw, Kirstie L Haywood, Esther Crawley in Journal of Patient-Reported Outcomes Vol 3, p 67 [First … Continue reading →

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Survey of the experiences of children & young people with ME for NICE

Posted on September 16, 2019 by wames

The experiences of children and young people with ME are needed to help create a new guideline for how health professionals in England and Wales diagnose and support them and their family. If you are aged between 9 and 18 … Continue reading →

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Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: A scoping review

Posted on September 9, 2019 by wames

Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: a scoping review, by Sarah S Collard, Jane Murphy in Journal of Child Health Care, 4 Aug 2019 [https://doi.org/10.1177/1367493519864747] Review abstract: Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) negatively impacts the quality … Continue reading →

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Academics object to the continued publication of the Lightning Process for children study

Posted on September 2, 2019 by wames

Trial By Error: an open letter to Dr Godlee about BMJ’s ethically bankrupt actions, by David Tuller in Virology blog, 28 August 2019   I have sent the following letter to Dr Fiona Godlee, editorial director of BMJ, about Archives … Continue reading →

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MAGENTA trial comment: ‘Targeting activity levels in ME/CFS

Posted on August 2, 2019 by wames

Michiel Tack queries some conclusions of the recently published MAGENTA trial paper. Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis, by Emma Solomon-Moore, Russell Jago, Lucy Beasant, Amberly Brigden, Esther Crawley in BMJ Paediatrics Open … Continue reading →

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MicroRNAs as biomarkers of pain intensity in patients with CFS

Posted on July 15, 2019 by wames

MicroRNAs as biomarkers of pain intensity in patients with chronic fatigue syndrome, by Hadeel A Al‐Rawaf, Ahmad H Alghadir, Sami A Gabr in Pain Pract. 2019 Jul 8. doi: 10.1111/papr.12817. [Epub ahead of print] Research abstract: BACKGROUND: Numerous experimental models … Continue reading →

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Medically documenting disability in ME/CFS cases [US]

Posted on July 3, 2019 by wames

Medically Documenting Disability in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases, by Barbara Comerford and Richard Podell in Front. Pediatr. 7:231, 2 July 2019 [doi: 10.3389/fped.2019.00231]   Article introduction: Patients with severe myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) experience debilitating physical and … Continue reading →

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Illness duration, mood and symptom impact in adolescents with CFS/ME

Posted on June 19, 2019 by wames

Illness duration, mood and symptom impact in adolescents with chronic fatigue syndrome/ myalgic encephalomyelitis?, by Francesca K Neale, Deborah Christie, Dougal S Hargreaves, Terry Y Segal in Archives of Disease in Childhood, Jun 13 2019 Letter excerpt: Chronic fatigue syndrome/myalgic encephalomyelitis … Continue reading →

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Millions of parents missing millions of moments

Posted on May 7, 2019 by wames

Millions of parents Missing millions of moments Missing due to lack of research and care for people with myalgic encephalomyelitis Do not let them miss a moment more #MillionsMissing  

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Social Services can threaten families of children with Chronic Fatigue (ME)

Posted on May 6, 2019 by wames

Online blog Broadly highlights the fact that one in five children with ME are investigated by social services, with some even being forcibly placed in a hospital or foster homes, with destructive effects on their health. Social services can threaten … Continue reading →

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