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patient experience

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  1. Dolphin
    Thread

    Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID, 2020, Kingstone/Chew-Graham/et al

    Free full text: https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143 Finding the 'right' GP: a qualitative study of the experiences of...
    Thread by: Dolphin, Oct 17, 2020 at 1:11 AM, 5 replies, in forum: Epidemics (including Covid-19)
  2. Kalliope
    Thread

    Trial By Error by David Tuller: How Professor Lubet's Nightmare Began...

    A few years ago, my friend and colleague Steven Lubet, a law professor and scholar at Northwestern University, wrote the following account of the...
    Thread by: Kalliope, Oct 14, 2020, 1 replies, in forum: General ME/CFS News
  3. Dx Revision Watch
    Thread

    Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services, 2020, Greenhalgh et al.

    [MEDIA] Preprint paper here: Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for...
    Thread by: Dx Revision Watch, Oct 14, 2020, 35 replies, in forum: Epidemics (including Covid-19)
  4. Andy
    Thread

    Rebuilding a tolerable life: narratives of women recovered from fibromyalgia, 2020, Eik et al

    Introduction: Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain and fatigue condition. Despite extensive research, there is currently...
    Thread by: Andy, Oct 10, 2020, 10 replies, in forum: Fibromyalgia and Connective Tissue Disorders
  5. Sly Saint
    Thread

    Patients’ experiences with fluctuations in persistent physical symptoms: a qualitative study - Barends et al July 2020

    Abstract Objectives To explore patients’ experiences with fluctuations in persistent physical symptoms (PPS) and to understand which factors—from...
    Thread by: Sly Saint, Jul 14, 2020, 16 replies, in forum: PsychoSocial ME/CFS Research
  6. Sly Saint
    Thread

    Open Canada (BC) Calling all physicians, specialists, allied health, clinical operations leads, and other clinicians!July 2020

    Dr. Hilary Robertson (ME|FM Society of BC) and Dr. Luis Nacul (BC Women’s Hospital’s Complex Chronic Diseases Program) would like to invite you to...
    Thread by: Sly Saint, Jul 8, 2020, 0 replies, in forum: Recruitment into current ME/CFS research studies
  7. Sly Saint
    Thread

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    Patient involvement in research—a brief history There is a well-described mismatch between the research that is done on a particular condition...
    Thread by: Sly Saint, Nov 13, 2019, 46 replies, in forum: Health News and Research unrelated to ME/CFS
  8. MeSci
    Thread

    'The real me shining through M.E.': Visualizing masculinity and identity threat in men with ME/CFS, Lucina Wilde et al., 2019

    Source: Psychology of Men & Masculinity Preprint Date: April 30, 2019 URL: https://www.dora.dmu.ac.uk/handle/2086/17973 'The real me shining...
    Thread by: MeSci, Jun 15, 2019, 14 replies, in forum: PsychoSocial ME/CFS Research
  9. Sly Saint
    Thread

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    By Open Medicine Foundation Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome...
    Thread by: Sly Saint, Apr 29, 2019, 464 replies, in forum: BioMedical ME/CFS Research
  10. Sly Saint
    Thread

    Open Impact of ME/CFS on patients & their family

    a clinical research study by a third-year medical student at Cardiff University Aim of the project: The aim of this project is to gain a better...
    Thread by: Sly Saint, Mar 9, 2019, 0 replies, in forum: Recruitment into current ME/CFS research studies
  11. Trish
    Thread

    Dismissing chronic illness: A qualitative analysis of negative health care experiences, 2019, L. Jason et al

    https://www.tandfonline.com/doi/abs/10.1080/07399332.2018.1521811?journalCode=uhcw20 Journal: Health Care for Women International Dismissing...
    Thread by: Trish, Mar 4, 2019, 18 replies, in forum: PsychoSocial ME/CFS Research
  12. Daisy
    Thread

    BMJ blog: The language used to describe patient feedback has a detrimental influence on safety culture

    Worth a read. Considers how patient feedback is viewed by health professionals and managers and cultural problems that PWME will likely recognise....
    Thread by: Daisy, Feb 5, 2019, 11 replies, in forum: Health News and Research unrelated to ME/CFS
  13. Andy
    Thread

    Hope, disappointment and perseverance: Reflections of people with ME/CFS and MS participating in biomedical research..., 2019, Lacerda et al

    Abstract Background The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical...
    Thread by: Andy, Jan 11, 2019, 2 replies, in forum: BioMedical ME/CFS Research
  14. Cheshire
    Thread

    Patients’ hopes for recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS): Toward a ‘recovery in’ framework. (2018) Jason

    Devendorf, A. R., Brown, A. A., & Jason, L. A. Chronic Illness Objective There is no consensus on recovery from myalgic encephalomyelitis and...
    Thread by: Cheshire, Dec 7, 2018, 12 replies, in forum: PsychoSocial ME/CFS Research
  15. WillowJ
    Thread

    Deadline today, Dec 1 (USA): Nomination for Patient Experience Innovation Awards

    it’s towards the end of the day and I just saw this, perhaps there isn’t time and we should keep it in mind for next year. (Assuming it’s a...
    Thread by: WillowJ, Dec 1, 2018, 3 replies, in forum: Advocacy Projects and Campaigns
  16. Sly Saint
    Thread

    Patient experiences of Dr Gabrielle Murphy

    Taken from a blog originally from 2011 but the comments go on to 2018; Saturday, 3 September 2011 The Hospital Appointment... so a little...
    Thread by: Sly Saint, Dec 1, 2018, 22 replies, in forum: General ME/CFS News
  17. MSEsperanza
    Thread

    Dutch journalist asks about pwME's objection to CBT/GET

    [MEDIA] Would someone who's on twitter please make this dutch journalist aware of... - the S4ME PACE briefing paper:...
    Thread by: MSEsperanza, Aug 28, 2018, 35 replies, in forum: General ME/CFS News
  18. Indigophoton
    Thread

    Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness, Devendorf et al, 2018

    Abstract Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in...
    Thread by: Indigophoton, Jul 11, 2018, 29 replies, in forum: PsychoSocial ME/CFS Research
  19. Melanie
    Thread

    'Chronic fatigue': The devastating illness that's so much worse than just tiredness - Honey Coach nine.com.au (July, 2018)

    When Jenny Meagher, 54, got home from an hour at Chadstone shopping centre recently, she spent the rest of the day in bed feeling like she had a...
    Thread by: Melanie, Jul 7, 2018, 4 replies, in forum: General ME/CFS News
  20. Cheshire
    Thread

    ME/CFS and the biopsychosocial model: a review of patient harm and distress in the medical encounter - Geraghty et al. 2018

    [MEDIA] Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue...
    Thread by: Cheshire, Jun 22, 2018, 92 replies, in forum: PsychoSocial ME/CFS Research
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