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patient experience

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  1. Sly Saint
    Thread

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Vocabulary 2022 Vasudevan et al

    Research Objectives To capture symptom experiences of persons living with ME/CFS to increase clinicians’ understanding of this complex illness....
    Thread by: Sly Saint, Dec 3, 2022 at 12:10 PM, 8 replies, in forum: ME/CFS research
  2. Arnie Pye
    Thread

    How to talk to doctors in order for them to work for us

    This post and some subsequent posts have been split from Denmark: A short report from 19 home visits, August 2022, by Peter la Cour and Susanna...
    Thread by: Arnie Pye, Aug 18, 2022, 4 replies, in forum: General clinical care
  3. Kalliope
    Thread

    Denmark: A short report from 19 home visits, August 2022, by Peter la Cour and Susanna la Cour

    Yesterday the Danish Clinic Mehlsen by professor and psychologist Peter la Cour, PhD and Susanne la Cour, GP published a report based on home...
    Thread by: Kalliope, Aug 18, 2022, 14 replies, in forum: General ME/CFS news
  4. zzz
    Thread

    New York Times: Articles about medical gaslighting

    I'm sure that the basic content of this article comes as no surprise to most people here, but I think it's really good to have such an extensive...
    Thread by: zzz, Mar 31, 2022, 5 replies, in forum: Other health news and research
  5. Suffolkres
    Thread

    United Kingdom: Hospital has left my daughter in ME agony, claims mother, July 17 2022

    https://www.thetimes.co.uk/article/hospital-has-left-my-daughter-in-me-agony-claims-mother-3kvrdzwjl Hospital has left my daughter in ME agony,...
    Thread by: Suffolkres, Jul 18, 2022, 6 replies, in forum: General ME/CFS news
  6. Sly Saint
    Thread

    “It’s All in Your Head”: A Meta-Synthesis,.., About Disenfranchising Talk Experienced by Female Patients with Chronic ... Pain Conditions, 2022, Hintz

    Elizabeth Hintz ABSTRACT Interactions between female patients with chronic pain and their medical providers in which providers question or...
    Thread by: Sly Saint, Jun 13, 2022, 0 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  7. Andy
    Thread

    Long Covid stigma: estimating burden and validating scale in a UK-based sample, 2022, Pantelic et al

    Edit: Now published, see post #4 in this thread. Abstract Background: Stigma can be experienced as perceived or actual disqualification from...
    Thread by: Andy, May 27, 2022, 6 replies, in forum: Long Covid research
  8. 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, 3 replies, in forum: Other health news and research
  9. 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
  10. 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, 42 replies, in forum: Psychosomatic theories and treatments discussions
  11. 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
  12. 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
  13. Wyva
    Thread

    “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, 2 replies, in forum: Long Covid research
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. Sly Saint
    Thread

    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    This thread has been moved from the News subforum and renamed following a published paper based on Cheston's work. Respect and Shame in...
    Thread by: Sly Saint, Nov 8, 2021, 43 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  20. 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
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