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patient experience

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  1. 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, 16 replies, in forum: Post-Exertional Malaise, Fatigue, and Crashes
  2. 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: Health News and Research unrelated to ME/CFS
  3. 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
  4. 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, 4 replies, in forum: General ME/CFS News
  5. Parsnip
    Thread

    Experience with LP 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
  6. 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
  7. 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
  8. Andy
    Thread

    The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study, 2021, 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, 8 replies, in forum: PsychoSocial ME/CFS Research
  9. 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
  10. 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
  11. Dolphin
    Thread

    “It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram, 2021, Groenevelt

    https://journals.sagepub.com/doi/full/10.1177/13634593211017187 Health: An Interdisciplinary Journal for the Social Study of Health, Illness and...
    Thread by: Dolphin, May 29, 2021, 6 replies, in forum: Health News and Research unrelated to ME/CFS
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. Jonathan Edwards
    Thread

    Guardian article on lockdown for those already limited by ME.

    https://www.theguardian.com/lifeandstyle/2021/feb/06/my-personal-lockdown-has-been-much-longer-on-chronic-illness-before-and-after-covid Not sure...
    Thread by: Jonathan Edwards, Feb 6, 2021, 7 replies, in forum: General ME/CFS News
  20. 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
Showing results 1 to 20 of 66
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