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  1. Sly Saint
    Thread

    Article (Australia): Thirty-five-year-old living [with ME] in aged care reveals what life is like inside during this pandemic

    Ketra has been forced to live in an aged care facility due to her severe chronic fatigue syndrome. Unable to find suitable accommodation...
    Thread by: Sly Saint, May 8, 2020, 0 replies, in forum: Epidemics (including Covid-19, not Long Covid)
  2. John Mac
    Thread

    Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in ME/CFS, Almenar-Perez et al. 2020

    Full Title: Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in Myalgic...
    Thread by: John Mac, Feb 7, 2020, 6 replies, in forum: ME/CFS research
  3. Sly Saint
    Thread

    Article: Former weightlifter tells how illness left her unable to get out of bed Jan 2020

    A former weightlifter has told how an illness left her unable to get out of bed. Gemma Allen, from Earby, spends most of her day lying in...
    Thread by: Sly Saint, Jan 11, 2020, 1 replies, in forum: General ME/CFS news
  4. Andy
    Thread

    Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

    You are being invited to take part in a research study to explore the views and needs of patients with severe ME/CFS. This project has been...
    Thread by: Andy, Nov 14, 2019, 25 replies, in forum: Recruitment into current ME/CFS research studies
  5. Andy
    Thread

    A Life Hidden - Blog posts by Naomi Whittingham

    Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but...
    Thread by: Andy, Nov 22, 2017, 154 replies, in forum: General ME/CFS news
  6. Jonathan Edwards
    Thread

    Building an evidence base for management of severe ME (including sleep management)

    I have been thinking a lot about the evidence base for ME/CFS management. There are some good negative studies but a positive evidence base is...
    Thread by: Jonathan Edwards, May 10, 2019, 314 replies, in forum: ME/CFS research
  7. Amy101
    Thread

    Clare Norton article about how doctors dismissed her as neurotic

    I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they...
    Thread by: Amy101, Mar 30, 2019, 11 replies, in forum: Caregiver support
  8. Tilly
    Thread

    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME...
    Thread by: Tilly, Mar 1, 2019, 57 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  9. Sly Saint
    Thread

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    CFS/ME National Services Survey Feb 2018 Snap shot audit BACME National Services Workstream Report Published March 2019...
    Thread by: Sly Saint, Jan 26, 2020, 400 replies, in forum: News from organisations
  10. MeSci
    Thread

    Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS/ME (2018) Chalder et al

    An alarming-sounding study ("Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.")! Source: Journal of...
    Thread by: MeSci, Jan 28, 2019, 66 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  11. Trish
    Thread

    NICE guidelines - Resources on severe and very severe ME.

    I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe...
    Thread by: Trish, Dec 13, 2018, 12 replies, in forum: 2020 UK NICE ME/CFS Guideline
  12. John Mac
    Thread

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    Objectives To define the prevalence of severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and its clinical characteristics in a...
    Thread by: John Mac, Sep 20, 2018, 26 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  13. Amy101
    Thread

    Merryn Crofts - our last family statement

    Hi, I apologise if this is the wrong area to post this but this is our last formal statement as a family. I’m unsure how to get it to come up on...
    Thread by: Amy101, Aug 25, 2018, 20 replies, in forum: General Advocacy Discussions
  14. Andy
    Thread

    Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome, 2018, Burgess et al (inc Chalder)

    Abstract Aims: The purpose of this article is to describe and evaluate a home based, family focused rehabilitative approach for severely affected...
    Thread by: Andy, Aug 18, 2018, 53 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  15. Sly Saint
    Thread

    Millions suffer from an invisible disease: My ME/CFS story - Ryan Prior

    " Atlanta (CNN)Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door....
    Thread by: Sly Saint, Aug 8, 2018, 3 replies, in forum: General ME/CFS news
  16. Alis
    Thread

    Severe me feature on bbc five live

    HI everyone there is a feature on bbc radio five live about severe me today.with Charles shepherd ,a severe me person and also be a phone in ....
    Thread by: Alis, Aug 8, 2018, 3 replies, in forum: General ME/CFS news
  17. Indigophoton
    Thread

    A Girl Behind Dark Glasses - Jessica Taylor-Bearman

    Jessica Taylor-Bearman's kickstarter-funded book is out on 3rd July, [MEDIA]
    Thread by: Indigophoton, Jun 23, 2018, 37 replies, in forum: General ME/CFS news
  18. Andy
    Thread

    Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be

    Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie...
    Thread by: Andy, May 9, 2018, 1 replies, in forum: General ME/CFS news
  19. Andy
    Thread

    ME Association "looking for someone with severe M.E. to be a case study for a future article"

    We are looking for someone with severe M.E. to be a case study for a future article that will appear in the mainstream media. The piece will...
    Thread by: Andy, Jan 30, 2018, 0 replies, in forum: General ME/CFS news
  20. Andy
    Thread

    Unofficial blog looking at OMF's Severely Ill Big Data study so far

    A first glance at the results of the “severely ill big data study” that was launched two years ago and that have been presented during the...
    Thread by: Andy, Dec 12, 2017, 14 replies, in forum: ME/CFS research
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