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patient experience

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  1. Sly Saint
    Thread

    The lived experience of female academics with long-term conditions impacting on energy levels and/or cognitive function,2023 Brewer

    Abstract The present study contributes to an expanding literature investigating the systemic and structural issues that serve to disadvantage...
    Thread by: Sly Saint, Dec 3, 2023, 2 replies, in forum: Other health news and research
  2. Kitty
    Thread

    Preprint "The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences, 2023, Hammer et al

    From @MSEsperanza: "The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients'...
    Thread by: Kitty, Nov 7, 2023, 6 replies, in forum: Long Covid research
  3. Andy
    Thread

    Medicalization and the search for legitimacy in people diagnosed with non-epileptic attack disorder 2023 Peacock et al

    Full title: ‘I just need to know what they are and if you can help me’: Medicalization and the search for legitimacy in people diagnosed with...
    Thread by: Andy, Oct 20, 2023, 4 replies, in forum: Other psychosomatic news and research
  4. MSEsperanza
    Thread

    News from Austria and Switzerland

    A thread for general news, events, articles etc from Austria and Switzerland.
    Thread by: MSEsperanza, Aug 25, 2021, 59 replies, in forum: Regional news
  5. SNT Gatchaman
    Thread

    BMJ — Long covid: the doctors’ lives destroyed by an illness they caught while doing their jobs

    https://www.bmj.com/content/382/bmj.p1983
    Thread by: SNT Gatchaman, Sep 21, 2023, 18 replies, in forum: Long Covid news
  6. CRG
    Thread

    The lived experience of depression, 2023, Fusar-Poli et al

    World Psychiatry Journal The lived experience of depression: a bottom-up review co-written by experts by experience and academics Paolo...
    Thread by: CRG, Sep 16, 2023, 0 replies, in forum: Other psychosomatic news and research
  7. Tom Kindlon
    Thread

    UpToDate: Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome, 2022, Jenkins

    https://www.uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome Patient perspective: Myalgic...
    Thread by: Tom Kindlon, Sep 6, 2023, 8 replies, in forum: Resources
  8. Sly Saint
    Thread

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    See also News from Scotland _________________ Moved from the News from the MEA thread. not news from MEA as such; but anyone know about this...
    Thread by: Sly Saint, Sep 8, 2022, 68 replies, in forum: Regional news
  9. Midnattsol
    Thread

    Clinical support and encouragement versus manipulation (includes motivational interviewing)

    Posts moved from Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al On...
    Thread by: Midnattsol, Jul 21, 2023, 22 replies, in forum: General clinical care
  10. SNT Gatchaman
    Thread

    ‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID, 2023, Fang

    ‘I am just a shadow of who I used to be’—Exploring existential loss of identity among people living with chronic conditions of Long COVID Chao...
    Thread by: SNT Gatchaman, Jul 2, 2023, 1 replies, in forum: Long Covid research
  11. SNT Gatchaman
    Thread

    “We’re drowning and we’re alone”:a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms,2023, Goodridge+

    “We’re drowning and we’re alone”: a qualitative study of the lived experience of people experiencing persistent post-COVID-19 symptoms Donna...
    Thread by: SNT Gatchaman, Jun 14, 2023, 2 replies, in forum: Long Covid research
  12. Sly Saint
    Thread

    ‘Welcome to my world’: a thematic analysis of the lived experiences of people with [ME] during the UK COVID-19 lockdown, 2023, Portch et al

    Abstract Objectives We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK...
    Thread by: Sly Saint, Jun 1, 2023, 5 replies, in forum: ME/CFS research
  13. Andy
    Thread

    Video: A day in the life of Anil van der Zee

    Copied post Not specifically about ME Awareness Day but as it was posted today... Anil van der Zee on Twitter [MEDIA] "Since I've been living...
    Thread by: Andy, May 12, 2023, 2 replies, in forum: Resources
  14. Andy
    Thread

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    Aims and Objectives In this study, we aimed to characterize the impact of long COVID on quality of life and approaches to symptom management among...
    Thread by: Andy, May 5, 2023, 16 replies, in forum: Long Covid research
  15. Andy
    Thread

    Lived experience of patients with Long COVID: a qualitative study in the UK 2023 Thomas et al

    Background Long COVID is a rapidly evolving global health crisis requiring interdisciplinary support strategies that incorporate the lived...
    Thread by: Andy, Apr 27, 2023, 2 replies, in forum: Long Covid research
  16. Michelle
    Thread

    Diane Shipley: Knowledge of Missing Out

    Diane Shipley: Knowledge of Missing Out At the start of lockdown, a friend texted that a party she was looking forward to had been canceled. I...
    Thread by: Michelle, Mar 20, 2023, 10 replies, in forum: General ME/CFS news
  17. Andy
    Thread

    Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary 2023 Johnson, Jason et al

    BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations....
    Thread by: Andy, Mar 14, 2023, 6 replies, in forum: ME/CFS research
  18. Sly Saint
    Thread

    Getting back to normal? Identity and role disruptions among adults with Long COVID 2023,Spence et al

    Abstract Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves ‘long-haulers’ experience for...
    Thread by: Sly Saint, Mar 8, 2023, 4 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  19. Andy
    Thread

    Abi Burton: 'I nearly died' - the Olympian wrongly sectioned and fighting back from an induced coma

    "Rugby had defined Burton's life, but she was soon given a "new perspective". Burton, who made her England debut aged 18, says she first noticed...
    Thread by: Andy, Mar 8, 2023, 6 replies, in forum: Psychosomatic theories and treatments discussions
  20. Dolphin
    Thread

    A narrative inquiry into the school experiences of teenagers living with ME/CFS, 2022, Lewis (DEdPsy Thesis)

    Source: University of Bristol Date: December 6, 2022 URL:...
    Thread by: Dolphin, Feb 16, 2023, 1 replies, in forum: ME/CFS research
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