children

https://www.surveymonkey.co.uk/r/GQR9Y8M

A journalist is looking for a case study of parents of a child with ME who have had social services become involved inappropriately. I googled and she’s written about ME before: https://www.thesun.co.uk/fabulous/6235179/chronic-fatigue-syndrome-me-and-me/

Source: Frontiers in Pediatrics Preprint Date: December 31, 2018 URL: https://www.frontiersin.org/articles/10.3389/fped.2018.00435/abstract The importance of accurate diagnosis of ME/CFS in children and adolescents: A commentary ----------------------------------------------------------...

Free full text: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2716981

https://www.csp.org.uk/frontline/article/childrens-pain-we-can-make-it-better links to FITNET another of NICE guidelines committee members.

just wondering if we could do something to show our support?

Moderator note: This post and several following posts have been copied or moved from this thread about the NICE guideline review appointments to enable discussion of issues raised. This is how I see it pan out: All the main players are in the new or only CFS centres, all are psychological...

This is from Aug. 15th 2018 and as far as I know not shared here already. Not sure if studies on ME patients are included in the review, but thought it was of interest nevertheless. E-Health interventions for anxiety and depression in children and adolescents with long-term physical conditions...

Article in Bicester Advertiser: " The number of young people caring for loved ones in Oxfordshire increased by 374 in just a few months earlier this year, according to new figures. There are now 2,900 known young carers in the county but officials predict the real number could be up to four...

http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/ Two videos, 12 and 14 minutes. The link also lists other resources for Pediatric ME/CFS. ME/CFS in children and young people Part 1 - diagnosis, symptoms and controversies Part 2 - management. Thanks to @Tom Kindlon for flagging this up...

A few years ago I had the idea of starting up a website in which hospitals, institutions or individual psychiatrists and psychologists who coerce exercise therapy upon unwilling ME/CFS patients could be named and shamed. I was just recently reminded of the idea after reading this thread of an...

ME/CFS Awareness part 2 (note part 1 is also at the link below) " Our Story We were a normal everyday family, doing all the things that families do. It wasn’t until my daughter fell ill at twelve years old, that everything fell apart. It would start by her sleeping for two weeks at a time. It...

Agenda: Safeguarding children with CFS, Pervasive refusal syndrome, Gathering evidence – the police experience

Oxfordshire ME Group for Action (OMEGA) Experiences of Children with ME July 2018 Main Report http://www.trevwilliams.co.uk/OMEGA%20Report%20Children's%20Experiences%20of%20ME.pdf Executive Summary...

https://bmjopen.bmj.com/content/6/7/e011255 " Study design This study started in September 2015 and recruitment is expected to finish in August 2016. This is a feasibility RCT with integrated qualitative methods." " Ethical considerations GET, CBT and activity management are recommended as...

Exploring more ways to take advantage of children. Open access at http://bmjopen.bmj.com/content/8/6/e022894

[Apologies if this has been posted before] Dear Paediatrician, We are parents of children with ME. We are writing to as many Paediatricians as we can because many of you look after children with ME. ME is the single greatest cause of long term school absences in children, and in this...

"Amy Mooney, MS, OTR/L, is an occupational therapist who knows first-hand about the role of caregiving and about Myalgic Encephalomyelitis, or "ME," as the mother of a child with this condition. ME is also referred to as Chronic Fatigue Syndrome (CFS), Myalgic Encephalopathy, Post-Viral Fatigue...

If you really want to, the rest can be read at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939995/