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patient experience

Page 6 of 10
  1. Andy
    Thread

    Europe: European ME Alliance (EMEA) (also EMECC and EMERG)

    Note from Moderators: IiME created the EMEA, and also the EMECC (Clinicians Council) and the EMERG (Research Group). The EMEA is a member of EFNA...
    Thread by: Andy, Jan 18, 2019, 28 replies, in forum: News from organisations
  2. 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
  3. Eagles
    Thread

    Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal

    Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients...
    Thread by: Eagles, Feb 29, 2020, 74 replies, in forum: General ME/CFS news
  4. InfiniteRubix
    Thread

    Closed New undergraduate research on the sociology of ME

    Hi all, Please consider completing this research survey from Marta Encefalomielitis Miálgica on Facebook's son : Hello! I am a fourth-year...
    Thread by: InfiniteRubix, Feb 1, 2020, 12 replies, in forum: Recruitment into current ME/CFS research studies
  5. Dolphin
    Thread

    Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A description of adult experiences, 2020, Essebo & Joqi

    From: Dr. Marc-Alexander Fluks Source: Blekinge Institute of Technology (Sweden) Date: January 23, 2020 URL:...
    Thread by: Dolphin, Jan 29, 2020, 14 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  6. Sly Saint
    Thread

    Article: My illness makes me feel like I've run a marathon after two bottles of wine - Dec 2019

    Smiling for the camera, radiant Catherine Allen looks a picture of health and happiness. Yet her life has been blighted by a cruel energy-sapping...
    Thread by: Sly Saint, Dec 17, 2019, 2 replies, in forum: General ME/CFS news
  7. DokaGirl
    Thread

    A Trial of ME - Elizabeth's Story. #MEAction article, November 2019

    I haven't seen this posted. It's a personal account by a UK pwME who participated in a study, pre-PACE, using GET/CBT. Very unfortunately, and...
    Thread by: DokaGirl, Nov 24, 2019, 21 replies, in forum: Psychosomatic theories and treatments discussions
  8. Andy
    Thread

    PEM for those who are, or were, mild sufferers, how would you describe it?

    So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the...
    Thread by: Andy, Nov 16, 2019, 107 replies, in forum: Post-Exertional malaise and fatigue
  9. 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: Research methodology news and research
  10. Binkie4
    Thread

    Is there any systematic research into the “ lived experience” of people with ME?

    Moderator note: The first 8 posts on this thread have been moved from here. ____________________________________ Is there any systematic research...
    Thread by: Binkie4, Nov 2, 2019, 14 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  11. ME/CFS Skeptic
    Thread

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    I've written a blog post about the recent amendment to the Cochrane review and how it doesn't address the major flaws. I will post the full text...
    Thread by: ME/CFS Skeptic, Oct 20, 2019, 19 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  12. Gecko
    Thread

    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

    Your experience of ME services - Survey report by #MEAction UK Article:...
    Thread by: Gecko, Oct 17, 2019, 41 replies, in forum: General ME/CFS news
  13. Trish
    Thread

    Huff Post: 'I Sometimes Feel Defeated By My Disability – And That's Okay', 2019, Pippa Stacey

    Excellent article in Huff Post by a woman with ME who was told to exercise, and suffered as a result. I Sometimes Feel Defeated By My Disability...
    Thread by: Trish, Oct 1, 2019, 3 replies, in forum: General ME/CFS news
  14. Sly Saint
    Thread

    Article in Bella magazine - 'Please Believe ME' 26 Sep 2019

    write up on AfME website: What's it like having a debilitating illness that some people don't believe exists? When it leaves you too unwell to...
    Thread by: Sly Saint, Sep 27, 2019, 29 replies, in forum: General ME/CFS news
  15. Sly Saint
    Thread

    Blog, the Mighty "Dear Doctor: What Not to Say to Me"

    full title Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients although the author has ME/CFS Dear Doctor, I know you are...
    Thread by: Sly Saint, Sep 12, 2019, 0 replies, in forum: General ME/CFS news
  16. Sly Saint
    Thread

    UK article: Mum trapped inside home says she feels like a burden on her family

    A “fiercely independent” woman who has spent months trapped inside her own home after her medical condition deteriorated has said that it took a...
    Thread by: Sly Saint, Sep 6, 2019, 4 replies, in forum: General ME/CFS news
  17. Jaybee00
    Thread

    Using patient experience data for drug approvals--SciAm article

    https://blogs.scientificamerican.com/observations/a-streamlined-pathway-to-drug-approval/ Author advocates for using patient experience data and...
    Thread by: Jaybee00, Aug 20, 2019, 4 replies, in forum: Research methodology news and research
  18. Dolphin
    Thread

    Loss of resources and demoralization in the chronically ill, Dischinger et al., 2019

    I have no idea what this might be like. I just thought it was interesting to see "loss of resources" mentioned in a paper. There is also a "loss...
    Thread by: Dolphin, Aug 13, 2019, 7 replies, in forum: Other psychosomatic news and research
  19. Andy
    Thread

    ME Association guest blog: "There’s No Point in me having a Netflix subscription or an Audible account" by Anna Wood

    Cognitive symptoms are common for everyone who has M.E., but it is the cognitive fatigue which disables me the most. It is the reason that I...
    Thread by: Andy, Aug 7, 2019, 3 replies, in forum: General ME/CFS news
  20. Andy
    Thread

    ME Association guest blog: "My daughter and the pervasive dangers of PACE in paediatric M.E." by Adam Johnson

    Two images will haunt me to the grave. First image: my daughter, Zoe, then 14, sits on the bottom stair. It’s time for bed. Or in an hour it...
    Thread by: Andy, Aug 6, 2019, 11 replies, in forum: General ME/CFS news
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