Search results

  1. NelliePledge

    Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

    Just tagging in @dave30th to make sure he knows about this
  2. NelliePledge

    Post-COVID-19 Syndrome is Rarely Associated with Damage of the Nervous System: ..., 2022, Fleischer et al

    Prof Matthias Kohl looks a good collaborator to have - mathematics of biology and medicine
  3. NelliePledge

    Long Covid in the media and social media 2022

    Similar data was in the UK ME Association report on their patient survey.
  4. NelliePledge

    An Integrative Neuropsychological Approach to Chronic Pain, Emotions and Clinical Symptoms, 2022, Montoro and Galvez-Sánchez

    As we know the problem of patient groups being taken in by researchers with this agenda is pretty widespread internationally. And they have also gone as far as setting up ‘tame’ patient groups so they can guarantee compliance.
  5. NelliePledge

    European ME Coalition:Press release: EU supports research on poorly understood diseases

    Agree @Andy we would all obviously ideally want to see more money it is absolutely a step in the right direction . It is a great achievement by Evelien and others involved and we definitely need to recognise that.
  6. NelliePledge

    From academic success to cognitive disability

    I’ve never been in the category of severe ME I have moderate ME. On days when I’m at home on my own schedule with no demands just pottering around I can almost forget that I have any cognitive difficulties. I can read short online posts ok for a few hours and write shortish posts. But even...
  7. NelliePledge

    Report on #SpeakUp project, to help improve health and social care provision for people with ME/CFS and Fibromyalgia in Sheffield

    Great news. You have a good relationship with Healthwatch and I’m hoping that will influence them here to maybe have a meeting with me next year. It will be so useful to compare the ME desert here to the set up you have over in Sheffield. I really want to make a step beyond just being one...
  8. NelliePledge

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    :banghead:
  9. NelliePledge

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I would have thought this would be a priority for the charities. If they can’t fund need to get bidding for lottery funds, get on to some of these trusts that are happy to fund Crawley.
  10. NelliePledge

    Tissue specific signature of HHV-6 infection in ME/CFS, 2022, Prusty et al

    From 2010 and 2014 respectively
  11. NelliePledge

    Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort... 2022 Parker et al

    Ah ok yes I didn’t think of that.
  12. NelliePledge

    Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort... 2022 Parker et al

    Clicked on the link to the article corresponding author is Manoj Sivan. I can’t copy the email address from the pop up box tho.
  13. NelliePledge

    Report on #SpeakUp project, to help improve health and social care provision for people with ME/CFS and Fibromyalgia in Sheffield

    @Gecko hope it’s ok to tag you. id be interested to know whether Sheffield Healthwatch are going to be sharing this with national Healthwatch and other local Healthwatch organisations. I’m going to use this to contact my local Health watch and the ICB in the new year.
  14. NelliePledge

    Understanding Long COVID; Mitochondrial Health and Adaptation—Old Pathways, New Problems 2022, Nunn et al

    Yes it grates on me. For one thing as someone who has gradual onset ME I don’t actually know precisely how long ago I started being affected by the illness. Certainly over 10 years before diagnosis. Yes I did normal unexceptional active stuff at one time, country walks, aerobics class for a...
  15. NelliePledge

    The Most Underfunded Disease at the NIH (Advocacy video by Winston Blick)

    Welcome to the forum @winston :thumbup:
  16. NelliePledge

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Just tagging @dave30th in to make sure he sees your posts @Midnattsol
  17. NelliePledge

    Information card, or similar?

    The MEAssociation one https://meassociation.org.uk/product/mea-alert-card/ I’ve not got one just sharing.
  18. NelliePledge

    Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - report issued April 2023

    That’s a good report from the Facebook group
  19. NelliePledge

    Relation of Urinary Mercury Level to Chronic Fatigue Syndrome among Workers of Artisanal and Small-scale Gold Mining: 2022

    yes @Wonko was going to write the same post
  20. NelliePledge

    The Feasibility and Impact of Practising Online Forest Bathing to Improve Anxiety, Rumination, Social Connection and Long-COVID Symptoms: 2022 McEwan

    They really think they know so much more than we do about how we should be living our lives.
Back
Top Bottom