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patient experience

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  1. JohnTheJack
    Thread

    I was in pain for years. After I was repeatedly told I just had ‘bad periods’, a giant cyst was found on my ovary. By Holly Bourne. The Times (London)

    For years I was told to doubt my own body. My own pain levels. I was put to sleep and cut open, only to be told I didn’t have a disease I did...
    Thread by: JohnTheJack, May 16, 2022 at 11:43 AM, 3 replies, in forum: Other health news and research
  2. ahimsa
    Thread

    Lessons from Myalgic Encephalomyelitis for Long Covid, 2022, Davenport et al

    New online course on Medbridge: Lessons From Myalgic Encephalomyelitis for Long COVID presented by Todd Davenport, PT, DPT, MPH, OCS...
    Thread by: ahimsa, Mar 2, 2022, 0 replies, in forum: Resources
  3. Kalliope
    Thread

    LP-fortellinger - Norwegian website sharing information and experiences about Lightning Process - now available in English

    A new website was launched today in Norway; LP-fortellinger (LP-stories). For now it has 32 stories about ME patients' negative experiences with...
    Thread by: Kalliope, Feb 18, 2022, 38 replies, in forum: Psychosomatic theories and treatments discussions
  4. Andy
    Thread

    ‘I can’t cope with multiple inputs’: a qualitative study of the lived experience of ‘brain fog’ after COVID-19 , 2022, Greenhalgh et al

    Abstract Objective: To explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19. Design...
    Thread by: Andy, Feb 13, 2022, 12 replies, in forum: Long Covid research
  5. Andy
    Thread

    Functional seizures: The patient’s perspective of a diagnostic and treatment odyssey, 2022, Andrini et al

    Highlights • Functional seizures remains a complex neuropsychiatric condition to identify and treat. • Practitioners must address management of...
    Thread by: Andy, Feb 4, 2022, 12 replies, in forum: Other psychosomatic news and research
  6. Wyva
    Thread

    Preprint: “I feel like my body is broken”: Exploring the experiences of people living with long COVID, 2022, Wurz et al

    Abstract Background: Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing and poorly understood. Exploring the...
    Thread by: Wyva, Jan 25, 2022, 1 replies, in forum: Long Covid research
  7. Sly Saint
    Thread

    Understanding the lived experience of Long Covid: A rapid literature review, 2021, Baz et al

    Abstract Long-Covid (LC), as a patient-defined illness, has rapidly emerged as both a medical and social issue since 2020, drawing headlines in...
    Thread by: Sly Saint, Dec 21, 2021, 1 replies, in forum: Long Covid research
  8. Sly Saint
    Thread

    Article Express: ‘I lost half my blood’: Woman recalls diagnosis of ‘mystery illness’ - it affects millions

    Pamela had to be hospitalised after she started regularly feeling under the weather. It wasn’t until later that Pamela was diagnosed with Chronic...
    Thread by: Sly Saint, Dec 14, 2021, 10 replies, in forum: General ME/CFS news
  9. Sly Saint
    Thread

    Podcast: Getting To Know ME - Chapter 17 (Hopes & Dreams)

    In this series: Getting to Know ME, we will explore what it's like living with a life-limiting condition ME (Myalgic Encephalomyelitis). We will...
    Thread by: Sly Saint, Dec 9, 2021, 2 replies, in forum: General ME/CFS news
  10. Haveyoutriedyoga
    Thread

    Long Covid/Post-Acute-Covid Syndrome as a‘hybrid condition’-A common framework for patients’ experience and pathophysiology (pre-print 2021) Richter

    Long Covid/Post-Acute-Covid Syndrome as a‘hybrid condition’-A common framework for patients’ experience and pathophysiology AUTHORS Dirk...
    Thread by: Haveyoutriedyoga, Dec 3, 2021, 2 replies, in forum: Long Covid research
  11. Sly Saint
    Thread

    NHS: Learn from patient safety events (LFPSE) service

    A new national NHS Learn from patient safety events service (previously called the patient safety incident management system – PSIMS – during...
    Thread by: Sly Saint, Nov 27, 2021, 0 replies, in forum: Other health news and research
  12. Wyva
    Thread

    Feeling like ‘a damaged battery’: exploring the lived experiences of UK university students with ME/CFS, 2021, Waite, Elliot

    ABSTRACT Introduction: Research regarding students with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) has been limited. This...
    Thread by: Wyva, Nov 25, 2021, 0 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  13. Sly Saint
    Thread

    Event: Respect and Shame in Healthcare and Bioethics, Dec 3rd 2021

    Respect and Shame in Healthcare and Bioethics Workshop: Peter Schaber, University of Zurich – “Respect for the Patient’s Wishes.” + ECR...
    Thread by: Sly Saint, Nov 8, 2021, 15 replies, in forum: General ME/CFS news
  14. Dolphin
    Thread

    ‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME), 2020, Farrell Delaney

    ‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME) Orlagh Farrell Delaney RGN, MA A thesis...
    Thread by: Dolphin, Oct 19, 2021, 9 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  15. Kalliope
    Thread

    "Can someone as Young as You Really Feel That Much Pain?" - A survey on How People With Fibromyalgia Experience Healthcare in Sweden, 2021, Hasselroth

    SAGE Open Nursing "Can Someone as Young as You Really Feel That Much Pain?" - A Survey on How People With Fibromyalgia Experience Healthcare in...
    Thread by: Kalliope, Oct 11, 2021, 17 replies, in forum: 'Conditions related to ME/CFS' news and research
  16. Andy
    Thread

    The impact of Post-COVID-Syndrome on functioning – results from a community survey..., 2021, Lemhöfer et al

    Full title: The impact of Post-COVID-Syndrome on functioning – results from a community survey in patients after mild and moderate...
    Thread by: Andy, Oct 9, 2021, 3 replies, in forum: Long Covid research
  17. Simon M
    Thread

    Published poems by Veronica Ashenhurst, who has Severe ME

    This thread contains excerpts from and links to all of Veronica's published poems. Veronica Ashenhurst, a friend of mine who is a Canadian lawyer...
    Thread by: Simon M, Oct 4, 2021, 11 replies, in forum: General Advocacy Discussions
  18. Dolphin
    Thread

    Loneliness in online students with disabilities qualitative investigation for experience, understanding and solutions, 2021, Kotera et al

    2 of their interviewees have/had CFS...
    Thread by: Dolphin, Sep 28, 2021, 0 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  19. Sly Saint
    Thread

    BMJ Opinion: To speed progress in treating chronic conditions, engage patients and caregivers as research partners, 2021, Lubell

    Chronic diseases like Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia have long been...
    Thread by: Sly Saint, Sep 21, 2021, 6 replies, in forum: General ME/CFS news
  20. Jaybee00
    Thread

    I’ll tell you the secret of cancer, Atlantic Article

    Very good writing here….(cancer, not ME/CFS). “Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t...
    Thread by: Jaybee00, Aug 27, 2021, 3 replies, in forum: Other psychosomatic news and research
Showing results 1 to 20 of 156
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