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severe me

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  1. ahimsa
    Thread

    UK: Campaign called #MPDoYourJobForME

    I saw this post by @MEFoggyDog on Mastodon so I thought I'd share. This same hashtag - #MPDoYourJobForME - is also being used on twitter so you...
    Thread by: ahimsa, Mar 22, 2023 at 11:29 PM, 0 replies, in forum: Advocacy Projects and Campaigns
  2. Sly Saint
    Thread

    "The responsibility scares me": Exploring the experiences of caregivers to the most severly ill ME-patients

    Presentation Name of the event: 19th Biennial European Society for Health and Medical Sociology Conference Sted: Forli, Italy Date from: 25...
    Thread by: Sly Saint, Sep 4, 2022, 4 replies, in forum: ME/CFS research news
  3. Sly Saint
    Thread

    Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Model, 2022,Baxter

    Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model...
    Thread by: Sly Saint, Jul 10, 2022, 5 replies, in forum: ME/CFS research news
  4. PeterW
    Thread

    The '25% have severe ME' statistic

    Hi All, I have just had a request from the Department of Health & Social Care policy team for a citation supporting the often cited statistic...
    Thread by: PeterW, Apr 25, 2022, 14 replies, in forum: Epidemiology (incidence, prevalence, prognosis)
  5. Mij
    Thread

    Ankle bathing for improved vascular function

    What is ankle bathing? Is this similar to contrast bathing? Comparison of the acute effects of ankle bathing versus moderate-intensity...
    Thread by: Mij, Apr 7, 2022, 4 replies, in forum: Other treatments
  6. Yvonne
    Thread

    End Malnutrition in ME

    I would like to see a campaign to end malnutrition in patients with severe ME. For this purpose, I am currently gathering information so I can...
    Thread by: Yvonne, Mar 30, 2022, 2 replies, in forum: Advocacy Projects and Campaigns
  7. Wyva
    Thread

    Predictors for Developing Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome following Infectious Mononucleosis, 2022, Jason et al

    Abstract Background: About 10% of individuals who contract infectious mononucleosis (IM) have symptoms 6 months later that meet criteria for...
    Thread by: Wyva, Mar 8, 2022, 40 replies, in forum: ME/CFS research
  8. lunarainbows
    Thread

    How to get help with surgery and hospital inpatient stays for Severe / Very Severe ME

    This is a post collating what I learned, when trying to access surgery as someone with the symptoms of Severe / Very Severe ME. I hope it is...
    Thread by: lunarainbows, Jan 21, 2022, 5 replies, in forum: General clinical care
  9. Wyva
    Thread

    Saliva fatigue biomarker index as a marker for severe ME/CFS in a community based sample, 2021, Jason et al

    ABSTRACT Objective The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically...
    Thread by: Wyva, Oct 28, 2021, 15 replies, in forum: ME/CFS research
  10. Sly Saint
    Thread

    Severe M.E Day - 8th of August 2021

    UNDEREXPOSED within four walls of severe m.e photography exhibit trailer UNDEREXPOSED within four walls of severe m.e photography exhibit launches...
    Thread by: Sly Saint, Aug 1, 2021, 4 replies, in forum: General ME/CFS news
  11. Arvo
    Thread

    Are there any studies that include bedbound CFS patiënts playing tennis within 6 months?

    Hello everyone, I'm doing some research which may or may not lead to writing an article. When reading old newspaper articles from The...
    Thread by: Arvo, Jun 10, 2021, 15 replies, in forum: Psychosomatic theories and treatments discussions
  12. Sly Saint
    Thread

    Article: Gifts to make Severe ME sufferers smile posted in Merryn Crofts' memory by Smile for ME charity

    Thirty ‘Smile’ gifts have been posted in Merryn Crofts’ memory to fellow Severe ME sufferers. Merryn, of Norden, sadly died in 2017, just days...
    Thread by: Sly Saint, May 13, 2021, 2 replies, in forum: General ME/CFS news
  13. 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, 8 replies, in forum: General ME/CFS news
  14. Andy
    Thread

    Three Cases of Severe ME/CFS in Adults, 2021, Williams and Issacson-Barash

    Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and...
    Thread by: Andy, Mar 7, 2021, 3 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  15. Amw66
    Thread

    Engaging with severly affected - surveys etc ( PLP survey coming up)

    Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to...
    Thread by: Amw66, Mar 1, 2021, 1 replies, in forum: General Advocacy Discussions
  16. Trish
    Thread

    Book - 'Severe ME: More Notes for Carers' by Greg Crowhurst, 2021

    Severe ME: More Notes for Carers by Greg Crowhurst https://www.stonebird.co.uk/
    Thread by: Trish, Feb 2, 2021, 0 replies, in forum: General ME/CFS news
  17. Andy
    Thread

    ME Research UK announce funding for "The effect of activated HERVs and the associated immune response in severe ME/CFS"

    Prof. Oltra’s hypothesis is that epigenetic changes cause activation of HERVs, which then leads to an innate immune response and the resulting...
    Thread by: Andy, Jan 25, 2021, 3 replies, in forum: ME/CFS research news
  18. Amw66
    Thread

    Ensuring severely affected can be heard

    I have started this thread as a lot of advocacy campaigns , and some research utilise online questionnaires to gather info. The James Lind...
    Thread by: Amw66, Jan 12, 2021, 30 replies, in forum: General Advocacy Discussions
  19. Kalliope
    Thread

    Norway: Røysumtunet, a centre for severe ME patients

    Promising news from Norway. The Norwegian ME Association is working together with the foundation and institution Røysumtunet with plans on...
    Thread by: Kalliope, Feb 28, 2020, 30 replies, in forum: Other clinics and doctors
  20. Tom Kindlon
    Thread

    Submissions are now sought for a special journal edition, "ME/CFS - The Severely & Very Severely Affected"

    Submissions are now sought for a special journal edition, "ME/CFS - The Severely & Very Severely Affected" Guest Editors: Dr. Kenneth Friedman...
    Thread by: Tom Kindlon, Feb 20, 2020, 2 replies, in forum: General ME/CFS news
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