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patient experience

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  1. Dolphin
    Thread

    What is it like to live with medically unexplained physical symptoms? A qualitative meta-summary, 2021, Polakovská & Řiháček

    This looks sympathetic, though I haven't read it through. https://www.tandfonline.com/doi/full/10.1080/08870446.2021.1901900 Psychology &...
    Thread by: Dolphin, Apr 23, 2021, 4 replies, in forum: PsychoSocial ME/CFS Research
  2. Andy
    Thread

    Blog: A Journey Through The Fog: "How the World Became More Accessible During the Covid-19 Pandemic"

    https://www.ajourneythroughthefog.co.uk/2021/04/how-the-world-more-accessible-covid-19-pandemic/ "Over the past year through the lockdowns and...
    Thread by: Andy, Apr 11, 2021, 0 replies, in forum: General disability topics and advocacy
  3. InitialConditions
    Thread

    [Blog] How Singer-Songwriter John Prine Helped Me Accept A Life of Illness

    This is a beautiful piece about becoming chronically ill, learning to cope under the extreme burden, and accepting a new reality. It was written...
    Thread by: InitialConditions, Apr 8, 2021, 11 replies, in forum: Lifestyle Management
  4. ahimsa
    Thread

    Essay in Hippocampus Magazine: "Salisbury Steak Day"

    I'm a bit late sharing this, since it was published on March 8, and I keep forgetting to post! But I really enjoyed this essay written by...
    Thread by: ahimsa, Apr 5, 2021, 5 replies, in forum: General ME/CFS News
  5. Milo
    Thread

    M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients

    M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients This is a preliminary study assessing the unmet...
    Thread by: Milo, Apr 2, 2021, 1 replies, in forum: BioMedical ME/CFS News
  6. Sly Saint
    Thread

    Article: ME & Long COVID; When Will Our Exhausted Cries Be Heard? Revd Joe Haward 24 March 2021

    Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the...
    Thread by: Sly Saint, Mar 24, 2021, 0 replies, in forum: General ME/CFS News
  7. Andy
    Thread

    Caught up in Care: Crafting Moral Subjects of Chronic Fatigue, Risor and Lillevoll, 2021

    They talk, in the abstract, about chronic fatigue only, but the patients they discuss have gone through a "CFS/ME" assessment, so may or may not...
    Thread by: Andy, Feb 18, 2021, 21 replies, in forum: PsychoSocial ME/CFS Research
  8. Trish
    Thread

    Book: When Force Meets Fate by Jamison Hill, published January 2021

    From Jamison Hill's blog, Jamison Writes: https://jamisonwrites.com/2021/01/26/my-book-is-officially-published/ MY BOOK IS OFFICIALLY PUBLISHED!...
    Thread by: Trish, Jan 27, 2021, 21 replies, in forum: General ME/CFS News
  9. Andy
    Thread

    Patients’ Experiences of Telephone-Based & Web-Based [CBT] for Irritable Bowel Syndrome: Longitudinal Qualitative Study, 2020, Bishop, Chalder et al

    Background: Cognitive behavioral therapy (CBT) is recommended in guidelines for people with refractory irritable bowel syndrome (IBS). However,...
    Thread by: Andy, Nov 21, 2020, 6 replies, in forum: Health News and Research unrelated to ME/CFS
  10. Hutan
    Thread

    UK: 'Managing my ME', 2010, ME Association

    'Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for...
    Thread by: Hutan, Nov 16, 2020, 12 replies, in forum: General ME/CFS News
  11. Sly Saint
    Thread

    Lived experiences in daily life with myalgic encephalomyelitis: 2020, Sandhu et al

    Abstract Introduction Myalgic encephalomyelitis is a complex systemic condition, causing severe symptoms that limit the quality of life of the...
    Thread by: Sly Saint, Nov 5, 2020, 2 replies, in forum: PsychoSocial ME/CFS Research
  12. 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, 6 replies, in forum: Epidemics (including Covid-19)
  13. 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
  14. 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)
  15. 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
  16. 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
  17. 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
  18. Andy
    Thread

    The experience of living with severe ME/CFS, Newton et al, study starts July 2020

    The plight of patients with severe ME/CFS has been the subject of a series of studies funded by ME Research UK over the last few years, and...
    Thread by: Andy, Jun 5, 2020, 0 replies, in forum: PsychoSocial ME/CFS Research
  19. Sly Saint
    Thread

    EMEA News Q1 2020 RESEARCH ON COVID-19 AMONG ME/CFS PATIENTS

    Our Dutch colleagues in ME/CVS Stichting Nederland have been working on a questionnaire that they wish to send out to as many ME patients as...
    Thread by: Sly Saint, Apr 13, 2020, 1 replies, in forum: Epidemics (including Covid-19)
  20. Invisible Woman
    Thread

    What does having ME mean to you?

    We've been discussing the name here:...
    Thread by: Invisible Woman, Mar 2, 2020, 18 replies, in forum: General Advocacy Discussions
Showing results 1 to 20 of 54
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