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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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    Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (2019) Tabby Davies, Simon Jones, Ryan Kelly

    This paper is cited by this thesis https://digital.lib.washington.edu/researchworks/bitstream/handle/1773/46434/Schroeder_washington_0250E_21985.pdf?sequence=1&isAllowed=y to back up these 2 points:
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    Symptoms, function and quality of life in myalgic encephalomyelitis/CFS: an Australian based, cross-sectional study, 2019, Donnelly

    From: Dr. Marc-Alexander Fluks B.Sc. Thesis Kate Donnelly Source: University of Tasmania Date: December 2019, online September 2020 URL: https://eprints.utas.edu.au/35168/ https://eprints.utas.edu.au/35168/1/Donnelly_whole_thesis.pdf
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Merged thread Free full text: http://www.ieti.net/tes/2020V4I103.html How would a post-virus chronic fatigue syndrome affect the performance of workers that fell ill from COVID-19? (full text in pdf)
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