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

    Somebody sent me this: Initial reply: Any suggestions? Edited to add: I just also sent this Perhaps this image and this link might do the job? https://www.meaction.net/stoprestpace Edited to add: she is happy with MEaction one
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    "The heterogeneity in the physical activity pattern between subjects within the CFS and control group did not differ." https://pubmed.ncbi.nlm.nih.gov/21843746/ "There is no difference in variation of physical activity levels between patients with chronic fatigue syndrome and healthy control...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    It's a few days since I read this but I don't think there's anything new in it for people who have been following things closely. But perhaps it might be of use to somebody who wants a summary.
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    Psychiatrist Peter White at the Royal Society of Medicine 2008 - Defining CFS/ME

    Here are the slides that went along with the presentation. I was particularly irked by his criticism of the woman in the mobility scooter
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    From Hans Knoop's PhD thesis. https://repository.ubn.ru.nl/bitstream/handle/2066/65596/65596_cognbethf.pdf?sequence=1 Peter White co-authored a paper with him on full recovery following CBT.
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    I saw this previously in a magazine for a local group in England in the early- to mid-2000s. Note that PDW having a weird view of recovery doesn't explain the big changes made in the recovery criteria in the PACE Trial - he had these views about recovery when the recovery criteria were set:
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    I haven't read the full paper yet. It would have been interesting to have some data on the questionnaire scores for those who took part. Based on some data we have, I suspect, based on the information I have appended the SF-36 physical functioning scores of the improved group were probably...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    To facilitate sharing of Jonathan Edwards' submission
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    CFS/ME database project (Zachary Elwood)

    I got this by email today; he also contacted me on Twitter. He said I could share this, if I wanted: Regarding my CFS/ME database project (https://www.cfs-me-network.com) that you signed up for updates about, I wanted to update you about that: I've been distracted with political-related...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Feel free to delete if it has been posted already
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    NICE ME/CFS draft guideline - publication dates and delays 2020

    I thought I'd give these a spin for those who never saw them before: https://meagenda.wordpress.com/2007/09/06/a-selection-of-points-the-barts-cf-service-made-during-the-nice-guidelines-for-cfs-me-tom-kindlon/ What a bizarre world to live in where a specialist health service would make a...
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    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    List of interviewees for "How does the disease start?" in order: Dr Nina Muirhead Grace R Lydia Dr Ben Marsh Linda Catherine Hale Joan McParland John Peters Anna Naomi Whittingham Edna (GP who first became ill during the time of the Royal Free outbreak!)
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    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    *Quick list of interviewees for "Reduced Function" in order: Dr Ben Marsh Dr Nina Muirhead "R" Grace Lydia Linda Graham McPhee Naomi Whittingham John Peters Anna Tom Kindlon Vera Kindlon Joan McParland Planning on watching the other one tomorrow
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