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  1. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I have been thinking that the possibility of Long Covid is potentially a powerful tool for getting people to comply with regulations to limit the spread of Covid-19. I've been wondering why publicity about Long Covid hasn't been used more in those countries that have been actively trying to get...
  2. Hutan

    Attitudes of incoming US politicians to ME/CFS and post-Covid 19 illness

    It doesn't look like a problem that some education by informed advocates can't solve. Videos of people with severe ME are pretty compelling for example. Overall, it sounds positive to me.
  3. Hutan

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I thought this was a terrific article, one that is good to send on to people to explain both the reality and likelihood of post-Covid symptoms. It's true that it doesn't mention ME/CFS, but it does talk about a diagnosis of 'post viral fatigue after Covid'.
  4. Hutan

    The 2018 UK NHS Digital annual report on the Improving Access to Psychological Therapies programme: a brief commentary, 2019, Moller et al

    https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2235-z Naomi Petra Moller, Gemma Ryan, Jasmine Rollings & Michael Barkham Abstract This commentary examines publicly available information on 2017–2018 outcomes in the UK government’s Improving Access to Psychological...
  5. Hutan

    Acceptability and Effectiveness of NHS-Recommended e-Therapies for Depression, Anxiety, and Stress: Meta-Analysis: Simmonds-Buckley 2020

    There's a thread for the first paper mentioned, with the astonishing statistics about patient dropout prior to and during the first two IAPT sessions, here: Predicting patient engagement in IAPT services: a statistical analysis of electronic health records, 2019, Davis et al And a thread for...
  6. Hutan

    Predicting patient engagement in IAPT services: a statistical analysis of electronic health records, 2019, Davis et al

    doi:10.1136/ebmental-2019-300133 Sci-Hub Alice Davis, Theresa Smith, Jenny Talbot, Chris Eldridge, David Betts ABSTRACT Background Across England, 12% of all improving access to psychological therapy (IAPT) appointments are missed, and on average around 40% of first appointments are not...
  7. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    Changes in DNA methylation profiles of myalgic encephalomyelitis/chronic fatigue syndrome patients reflect systemic dysfunctions, Helliwell et al 2020 Another paper from Professor Tate's small team in Dunedin, this one on epigenetics.
  8. Hutan

    Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

    Overall, compared to previous NIH Telebriefings, I thought this one was a lot more constructive and less frustrating. It seemed more respectful of the patient community. Progress is still terribly slow, and funding still horrendously inadequate. But perhaps post-Covid is making a difference...
  9. Hutan

    Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

    Alison Kanas - Community Outreach and Engagement, Centre for Solutions for ME/CFS, Columbia University Alison thanked everyone who had contributed to the Microbe Discovery Project. It helped Columbia demonstrate community engagement and be selected as a CRC. Columbia had made a website...
  10. Hutan

    Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

    There will be a transcript available, but here are some brief notes, that may or may not be entirely accurate: Koroshetz - NIH Showed some slides on studies of post-Covid symptoms e.g. a recent Spanish study finding 55% of hospitalised patients had fatigue after 3 months, with there being no...
  11. Hutan

    United Kingdom: News from Forward-ME Group

    From outside the UK, it looks as though there are a lot of organisations. Is that the case for other diseases e.g. multiple sclerosis, Parkinsons in the UK, or do they tend to have one strong, consolidated national organisation? I wonder if the ME Action group could find a place within one of...
  12. Hutan

    August 21, 2020 IACFS/ME Virtual Conference

    From the Vallings report. First, I can't politely say what I think about Violetta Renesca's well-meaning efforts to improve the self-efficacy of people with ME/CFS, other than, 'has she not heard of the placebo effect and its influence on subjective outcomes?' Second, it's a shame that...
  13. Hutan

    News from Australia

    Thread on a review of leptin, in progress in South Australia: Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al
  14. Hutan

    Circulating leptin levels in patients with [ME], [CFS] or fibromyalgia a systematic review protocol, 2020, Musker et al

    Authors: Musker, Michael1,2,3; McArthur, Alexa2; Munn, Zachary2; Wong, Ma-Li1,3,4 1 Mental Health and Wellbeing, South Australian Health and Medical Research Institute, Adelaide, SA, Australia 2 The Centre for Evidence-based Practice South Australia (CEPSA): A JBI Centre of Excellence...
  15. Hutan

    Coronavirus - worldwide spread and control

    Message from the moderation team: With the support of the committee, the moderation team has decided to permanently close the 'Coronavirus - Worldwide Spread and Control' thread, and not allow further posting of, or discussing, data on infection and death rates around the world, and discussion...
  16. Hutan

    A cohort study of whether parental separation and lack of contact [...] predicts disease severity [...] in young peoples ME/CFS, 2020, O'Donnell et al

    Great points on this thread. If these people wanted to delve into family relationships in a useful way, they could look at what happens to families when a child gets either ME/CFS or another similarly debilitating chronic illness. i.e. rates of marriage breakdown and decreased extended family...
  17. Hutan

    Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for [ME/CFS], 2020, Mitchell et al

    One of the criteria to be included in the 'Target Population' was 'PEM lasting more than 24 hours'. The participants in the non-target population presumably either didn't have PEM or had PEM that lasted less than 24 hours. It's not clear how the PEM criteria was determined, but it looks as...
  18. Hutan

    Effect of disease duration in a randomized Phase III trial of rintatolimod, an immune modulator for [ME/CFS], 2020, Mitchell et al

    Here are the scatter plots so you can make up your own mind. The first one is for the so-called 'target population', the second one is for everyone else. Illness duration is on the x axis, with different scales for each chart. % change in the time on the treadmill (from baseline to end of...
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