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  1. Dolphin

    Stanford ME/CFS Initiative: PEM Avoidance Toolkit

    I'm not sure whether "oversleeping" is that bad a thing in a lot of cases. I would also question the example of the teenager who plays a bit of basketball now and again: I think they are playing with fire. But I suppose you need to adjust advice to reality. But I think it contains some useful...
  2. Dolphin

    Stanford ME/CFS Initiative: PEM Avoidance Toolkit

    I have seen a few people in recent years post good day/bad day photos side-by-side on social media. I can't remember whether there was a specific hashtag. It could be done again really at any stage.
  3. Dolphin

    Version 1.0 of ME/CFS Common Data Elements now available

    The page has definitely been updated since January.
  4. Dolphin

    Tonight on Dutch TV - ME / CFS documentary

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  5. Dolphin

    Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

    by Paul Whiteley PhD continues at: https://tinyurl.com/y9q5vtwj i.e. https://questioning-answers.blogspot.ie/2018/02/fitnet-nhs-fatigue-in-teenagers-protocol-cfs.html
  6. Dolphin

    (Stanford, California, USA) Recruiting: [2018-02-23] Evaluating Hormones in women with ME/CFS

    Given you have to make 2 study trips to Stanford, I don't think I will.
  7. Dolphin

    (Stanford, California, USA) Recruiting: Brain MRI and Immune Profiling CFS

    via https://cfsme-registry.info
  8. Dolphin

    (Stanford, California, USA) Recruiting: [2018-02-23] Evaluating Hormones in women with ME/CFS

    via https://cfsme-registry.info
  9. Dolphin

    (Oxford,UK) Recruiting: A study looking into energy status & MRS in CFS

    via https://cfsme-registry.info [2018-02-23] Energy Status and MRS
  10. Dolphin

    A general thread on the PACE trial!

    The latter. That's the argument they tried to use to block Alem's request.
  11. Dolphin

    A general thread on the PACE trial!

    The more data that is looked for in one data set, the easier it is for them to claim participants are identifiable and hence they shouldn't release the data.
  12. Dolphin

    Stigma in Myalgic Encephalomyelitis and its association with functioning, 2018, Baken et al

    Shows the economic impact of the illness:
  13. Dolphin

    Stigma in Myalgic Encephalomyelitis and its association with functioning, 2018, Baken et al

    The Stigma Short-form scale I often find it useful in such papers to look at the wording of the questionnaires themselves. How they are described in the text may not as good as it could be...
  14. Dolphin

    A general thread on the PACE trial!

    https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
  15. Dolphin

    A general thread on the PACE trial!

    https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME
  16. Dolphin

    Early menopause and other gynecologic risk indicators for CFS in women, 2015, Boneva, Lin, Unger

    2 critiques: Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies 2009;20;93. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.508.1082&rep=rep1&type=pdf Jason LA, &...
  17. Dolphin

    Early menopause and other gynecologic risk indicators for CFS in women, 2015, Boneva, Lin, Unger

    Uses the Reeves et al. 2005 criteria which are generally accepted to be terrible. Found a prevalence for CFS of 2.54% in Georgia.
  18. Dolphin

    Proposed 2019 presidential budget for CDC involves zeroing of CFS program

    A lot of it goes on this research programme:
  19. Dolphin

    The economic burden of CFS/ME: an initial summary of the existing evidence and recommendations for further research (Brenna & Gitto, 2017)

    It talks about all sorts of economic burdens. If we are to get public health systems to pay for treatments such as expensive drugs, it is useful to be able to argue there is an economic case for it.
  20. Dolphin

    The economic burden of CFS/ME: an initial summary of the existing evidence and recommendations for further research (Brenna & Gitto, 2017)

    I don't think this is a good fit for "PsychoSocial ME/CFS Research" but then I didn't seem to fit in "BioMedical ME/CFS Research" either. I think there needs to be another category for research or else they are all collapsed into one, which would be my preference.
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