young people

  1. Trish

    RCPCH conference 2019 abstract: Prognosis for childhood CFS is excellent, Robertson et al

    Prognosis for childhood CFS is excellent For other conference abstracts see this thread: https://www.s4me.info/threads/me-cfs-contributions-at-royal-college-of-paediatrics-and-child-health-conference-may-2019.9555/
  2. MyalgicE

    Australian teenager tells story of threats and mistreatment

    A young woman with very severe ME contacted me to help tell her story. Over the past couple of months she’s told her harrowing story of mistreatment, including two visits to psychiatric facilities. Right now she is in an awful situation, so sick she can’t tolerate people in the same room and...
  3. rvallee

    Social Services Can Threaten Families of Children with Chronic Fatigue

    Pretty good article from Vice about the reality of social services in the UK threatening sanctions against the parents of children with ME. People think such barbaric nonsense is in the past. Not so much...
  4. Esther12

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    Can't actually find this paper, but the abstract has been posted at Bath and I thought it might be of interest, even though they don't really say much: https://researchportal.bath.ac.uk/en/publications/physical-activity-patterns-among-children-and-adolescents-with-mi (Edit: Open access...
  5. Andy

    Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician, 2019, (Faith) Newton

    https://www.frontiersin.org/articles/10.3389/fped.2019.00104/full
  6. A

    Clare Norton article about how doctors dismissed her as neurotic

    I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they treated both her and Merryn Crofts (her daughter and my sister). It details how we was investigated for Munchausen by proxy etc. Many thanks and hope...
    • Amy101
    • Thread
    • clare norton deaths by me me/cfs merryn crofts severe young people
    • Replies: 11
    • Forum: Caregiver support
  7. Andy

    Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al

    Paywalled at https://journals.sagepub.com/doi/abs/10.1177/1359104519835583?journalCode=ccpa Alt at https://sci-hub.se/https://journals.sagepub.com/doi/abs/10.1177/1359104519835583?journalCode=ccpa
  8. Andy

    Associations Between Autonomic and Orthostatic Self-report and Physician Ratings of Orthostatic Intolerance in Youth, 2019, Jason et al

    Paywalled at https://www.clinicaltherapeutics.com/article/S0149-2918(19)30070-0/fulltext
    • Andy
    • Thread
    • 2019 leonard jason me/cfs orthostatic intolerance paper symptoms young people
    • Replies: 0
    • Forum: ME/CFS research
  9. Tilly

    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME will go to the GP or hospital? Almost never. What condition will the Dr/Paediatric know what to look out for? I now need a bucket of coffee and to...
  10. Andy

    Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service, 2019, Rowe

    Open access at https://www.frontiersin.org/articles/10.3389/fped.2019.00021/full
    • Andy
    • Thread
    • 2019 adolescents epidemiology me/cfs paper prognosis rowe young people
    • Replies: 48
    • Forum: ME/CFS research
  11. Sly Saint

    MYRIAD - My Resilience in Adolescence project UK

    http://myriadproject.org/myriad-project/ http://myriadproject.org/ The MYRIAD collaboration: Kings College London, University of Oxford, University of Exeter, MRC; Cognition and Brain sciences unit, University of Cambridge, UCL, Wellcome. see also: Mindfulness Training in UK Secondary Schools...
  12. Andy

    Factors affecting quality of life in children and adolescents with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders,2019,Mu et al

    Paywalled at https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61055
  13. MeSci

    Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS/ME (2018) Chalder et al

    An alarming-sounding study ("Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.")! Source: Journal of Behavioral Medicine Preprint Date: January 25, 2019 URL: https://link.springer.com/article/10.1007/s10865-019-00010-x Psychological and demographic...
  14. Sly Saint

    Schoolboy, 14, struck down by ME during a football match – yet doctors dismissed his symptoms as him being a ‘lazy teenager’

    https://inews.co.uk/news/real-life/schoolboy-14-struck-chronic-fatigue-syndrome-cfs-myalgic-encephalomyelitis-me-football-match/
    • Sly Saint
    • Thread
    • adolescents article exercise exercise intolerance me/cfs media young people
    • Replies: 5
    • Forum: General ME/CFS news
  15. Andy

    Are You a Young Person Affected by ME? How do you Visualize Health Equity? Join a National Contest

    https://www.meaction.net/2019/01/11/are-you-a-young-person-affected-by-me-how-do-you-visualize-health-equity-join-a-national-contest/
  16. A

    Adolescent’s descriptions of fatigue, fluctuation and payback in CFS/ME: interviews with adolescents and parents, 2018, Crawley et al

    New paper - has a number of red flags. Focuses on fatigue description and " payback" as a description for PEM without much definition. Questionnaire based, pre diagnosed Mild/ moderate but not housebound I don't know if any comorbidities (OI, EDS etc) have even been thought about I have not...
  17. Andy

    Associations between clinical symptoms, plasma norepinephrine & deregulated immune gene networks in subgroups of adolescent w/CFS, 2018, Nguyen et al

    Paywalled at https://www.sciencedirect.com/science/article/pii/S0889159118307967?via%3Dihub
    • Andy
    • Thread
    • 2018 genetics immunology me/cfs nguyen norepinephrine paper t-cells young people
    • Replies: 3
    • Forum: ME/CFS research
  18. Andy

    Does fatigue and distress in a clinical cohort of adolescents with CFS correlate with fatigue and distress in their parents?, 2018, Loades et al

    Paywalled at https://onlinelibrary.wiley.com/doi/abs/10.1111/cch.12626
  19. Andy

    School Nurses Can Improve the Lives of Students With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2018, Friedman et al

    Does this count as "good" psychosocial research, as in, in terms of where to put it on the forum? Paywalled at http://journals.sagepub.com/doi/abs/10.1177/1942602X18795299?journalCode=nasb
  20. Andy

    Predictors of chronic fatigue in adolescents six months after acute Epstein-Barr virus infection: a prospective cohort study,2018,Pedersen et al

    I've put this in Research Unrelated to ME/CFS for the time being as the authors seem to do lot of flip-flopping between Chronic Fatigue and Chronic Fatigue Syndrome, it could be that it should be in Psychosocial Research. Open access at...
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