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  1. Simone
    Post

    News from Australia

    Emerge Australia hosted an event at Parliament House in Canberra today. There were a wide range of speakers (including little old me). Details of...
    Post by: Simone, Mar 27, 2024 in forum: Regional news
  2. Simone
    Post

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    Does anyone have a PDF of the updated Best Practice page?
    Post by: Simone, Feb 27, 2024 in forum: General ME/CFS news
  3. Simone
    Post

    Open Australia: AusMe Registry (ME/CFS, Long COVID and healthy volunteers)

    Great questions! I’ll try to address them as best I can (I’m not working on the registry): - Building on the registry: expanding on the...
    Post by: Simone, Oct 12, 2023 in forum: Recruitment into current ME/CFS research studies
  4. Simone
    Post

    News from Australia

    Unfortunately (or fortunately, depending on how you look at it) this story is not true, and based on misinformation. Annika Wells has made...
    Post by: Simone, Oct 7, 2023 in forum: Regional news
  5. Simone
    Post

    Australia: News from Emerge Australia

    Thanks, Trish. It’s unfortunate that the episode is so long (both for me recording it, and for everyone listening).
    Post by: Simone, Oct 2, 2023 in forum: News from organisations
  6. Simone
    Post

    Australia: News from Emerge Australia

    Thanks, Ravn. I’m glad you liked it. The interview was recorded a few weeks ago, so I’ve recovered now. :) I included the PEM voice addendum...
    Post by: Simone, Oct 2, 2023 in forum: News from organisations
  7. Simone
    Post

    Australia: News from Emerge Australia

    Recently I was interviewed for Emerge’s new podcast series. I was asked about my life with ME/CFS, what I’ve learned, and how I cope. I did my...
    Post by: Simone, Oct 1, 2023 in forum: News from organisations
  8. Simone
    Post

    News from Australia

    The first round of the Medical Research Future Fund grants for Long COVID were opened today. This is $14m of the allocated $50m for Long COVID....
    Post by: Simone, Sep 6, 2023 in forum: Regional news
  9. Simone
    Post

    News from Australia

    Not to mention the fact that they still refuse to acknowledge any possible risk of harm.
    Post by: Simone, Aug 10, 2023 in forum: Regional news
  10. Simone
    Post

    News from Australia

    The review of the NICE guidelines got some media attention here, in an online medical rag. It’s predictably bad. (Apologies if this has already...
    Post by: Simone, Aug 10, 2023 in forum: Regional news
  11. Simone
    Post

    COFFI - The international collaborative on fatigue following infection

    Given there’s a typo on Daniel Forrest’s listing, it’s not possible to tell if it’s meant to read “affected by” or “previously affected by”. It’s...
    Post by: Simone, Apr 27, 2023 in forum: News from organisations
  12. Simone
    Post

    USA: Cornell Center for Enervating NeuroImmune Disease and Maureen Hanson

    Does anyone know what this means given that applications for the CRCs RFA aren’t open until next month? How did Hanson get this funding? What does...
    Post by: Simone, Apr 15, 2023 in forum: News from organisations
  13. Simone
    Post

    Exercise & Sports Science Australia funds graded exercise study for Long COVID, 2023

    I haven’t been around much lately, but just wanted to say that Emerge wrote to this group, highlighting the issues with the study. We haven’t...
    Post by: Simone, Apr 11, 2023 in forum: Long Covid news
  14. Simone
    Thread

    Unravelling Long COVID (Goldenberg & Dichter) 2022

    Apologies if this has already been posted! I couldn’t find it. This is a recently published textbook on Long COVID. It is described as an...
    Thread by: Simone, Jan 28, 2023, 1 replies, in forum: Long Covid news
  15. Simone
    Post

    (CDC) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2023

    So much about this is frustrating. We knew it was coming, but still frustrating. But what I’m finding infuriating is how much the PACE trial is...
    Post by: Simone, Jan 23, 2023 in forum: ME/CFS research
  16. Simone
    Post

    Impact of COVID infection on ME/CFS: surveys

    Thanks!
    Post by: Simone, Jan 18, 2023 in forum: General ME/CFS discussion
  17. Simone
    Post

    Impact of COVID infection on ME/CFS: surveys

    Yes, we really do!
    Post by: Simone, Jan 18, 2023 in forum: General ME/CFS discussion
  18. Simone
    Thread

    Impact of COVID infection on ME/CFS: surveys

    Hi everyone, I’m interested in any research or surveys which track the impact of a COVID infection on ME/CFS symptoms and/or functioning. I’ve...
    Thread by: Simone, Jan 17, 2023, 6 replies, in forum: General ME/CFS discussion
  19. Simone
    Post

    Experience with LDN?

    LDN helped my cognitive functioning and sleep and reduced my pain and parasthesia. It’s been good for those symptoms but I’m still mostly...
    Post by: Simone, Jan 10, 2023 in forum: Drug and supplement treatments
  20. Simone
    Post

    Butterfly symbol for ME/CFS

    For anyone interested, someone sent me an article from an old Emerge journal. Emerge’s journal is also called Emerge (yes, confusing! The journal...
    Post by: Simone, Jan 8, 2023 in forum: General Advocacy Discussions
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