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patient experience

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  1. 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, 13 replies, in forum: General ME/CFS News
  2. 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: PsychoSocial ME/CFS Research
  3. 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: Epidemics (including Covid-19)
  4. 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: PsychoSocial ME/CFS Research
  5. 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
  6. 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 Health News and Research
  7. Andy
    Thread

    Long Covid – The illness narratives, 2021, Rushforth, Greenhalgh et al

    Highlights • Long Covid is a patient-defined illness which gained legitimacy in online communities. • We analysed long Covid narratives using...
    Thread by: Andy, Aug 24, 2021, 21 replies, in forum: Epidemics (including Covid-19)
  8. MSEsperanza
    Thread

    Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times (Sean O'Neill)

    Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times, August 18 2021 by Sean O' Neill As her 30th birthday...
    Thread by: MSEsperanza, Aug 18, 2021, 13 replies, in forum: General ME/CFS News
  9. Dolphin
    Thread

    Successful Psychological Strategies of Experienced Chronic Fatigue Patients: A Qualitative Study, 2021, Hall et al

    I have no idea what this is like. Free full text https://journals.sagepub.com/doi/full/10.1177/23743735211034962 Successful Psychological...
    Thread by: Dolphin, Aug 10, 2021, 27 replies, in forum: PsychoSocial ME/CFS Research
  10. Rosie
    Thread

    Why does it take years to move down a level of ME?

    Is this more likely due to an immune system problem? For me there came a point where after many years with very severe ME where resting finally...
    Thread by: Rosie, Jul 26, 2021, 17 replies, in forum: Post-Exertional Malaise, Fatigue, and Crashes
  11. Andy
    Thread

    “Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans .. with GWI, 2021, Bloeser

    Full title: “Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with...
    Thread by: Andy, Jul 17, 2021, 2 replies, in forum: Other Health News and Research
  12. Denise
    Thread

    "My experience of chronic fatigue syndrome" anonymous 16 year old

    A young person who thinks there are effective treatments for cfs. https://bmjpaedsopen.bmj.com/content/5/1/e001165
    Thread by: Denise, Jul 13, 2021, 21 replies, in forum: PsychoSocial ME/CFS News
  13. Joh
    Thread

    New Documentary "Living with Chronic Fatigue Syndrome"

    The German/French TV channel ARTE premiered a documentary yesterday: "Living with Chronic Fatigue Syndrome". German and French can be chosen as...
    Thread by: Joh, Jul 11, 2021, 17 replies, in forum: General ME/CFS News
  14. Dolphin
    Thread

    I AM MADELINE podcast series

    A performer (actress, singer), leader, mentor, and community volunteer with her hands on a number of projects, Madeline is a joy to know. She...
    Thread by: Dolphin, Jul 5, 2021, 8 replies, in forum: General ME/CFS News
  15. Parsnip
    Thread

    Experience with Lightning Process course 2008, Norway

    This is long. If any one reads it, and have any information about some of the questions i have in there, especially if anyone have information...
    Thread by: Parsnip, Jul 2, 2021, 49 replies, in forum: Alternative Therapies
  16. Hutan
    Thread

    Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review, 2021, Ghai et al

    Abstract In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS)...
    Thread by: Hutan, Jun 23, 2021, 3 replies, in forum: Neurological diseases
  17. Sly Saint
    Thread

    Guest Blog MEA: The Shame

    I’m ashamed to say I have M.E. I’ve collapsed in the street and when I’ve managed to explain that I don’t need an ambulance, it’s just M.E, I...
    Thread by: Sly Saint, Jun 22, 2021, 10 replies, in forum: General ME/CFS News
  18. Andy
    Thread

    The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study, 2021, Gimeno Torrent

    Abstract Objective: How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general...
    Thread by: Andy, Jun 16, 2021, 10 replies, in forum: PsychoSocial ME/CFS Research
  19. Sly Saint
    Thread

    Video: Fatigue, Pacing and PEM Management | Lessons from ME/CFS - With Dr Ben Marsh

    I know this video has been mentioned on another thread but I think it might have been missed by many and deserves a thread of its own. In Episode...
    Thread by: Sly Saint, Jun 15, 2021, 4 replies, in forum: General ME/CFS News
  20. Andy
    Thread

    Elements of Suffering in [ME/CFS]: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected, 2021, Fennell et al

    Full title: Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the...
    Thread by: Andy, Jun 1, 2021, 14 replies, in forum: PsychoSocial ME/CFS Research
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