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  1. J

    SMILE trial data to be released

    Thank you everyone for the kind words. I won't clutter up the thread with replying to each one, but they are appreciated.
  2. J

    SMILE trial data to be released

    It's the legal test: can a resourceful, motivated person identify someone from the data released.
  3. J

    SMILE trial data to be released

    This can only be appealed on a point of law.
  4. J

    SMILE trial data to be released

    EA/2018/ 0142 John Peters v the ICO and University of Bristol. The First Tier Tribunal finds for the Appellant. And orders the release of the SMILE trial data. Unanimous decision. Date: 11 March 2019 Promulgated: 12 March 2019 Decision here...
  5. J

    The life-changing magic of sharing your data (2019) Hunt

    https://www.nature.com/articles/s41562-019-0560-3#Sec6
  6. J

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Yes, absolutely. I just meant in terms of treating the illness. I didn't mean to suggest that I was against psychotherapy in itself. And in fact that's another point those psychiatrists make.
  7. J

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    I agree it's important not so see this as medical or mental. It also is not good tactics: Some of the people working in this field who support us or who remain open to hearing our case are those who are fighting the 'critical psychiatry' people who try to deny there is anything but the...
  8. J

    Trial By Error: Stupid Studies

    Yes, and this is a bit more on the funding. https://www.nihr.ac.uk/about-us/how-we-are-managed/our-structure/infrastructure/biomedical-research-centres.htm And the SLAM one here. https://www.maudsleybrc.nihr.ac.uk/
  9. J

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    My understanding is that they have tried to suggest certain personality types and life experiences are linked to developing ME and that trauma can 'trigger' the illness.
  10. J

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I think that's an important point. The BPS model is not 'psychosomatic' or 'psychological' as generally understood. ME is not seen as a product of an underlying emotional/psychological problem. Indeed such a problem would actually exclude a diagnosis of ME. The BPS crowd have in a sense...
  11. J

    Feasibility RCT of cocoa for fatigue in MS (2019) Coe et al

    Drink cocoa for chronic fatigue. Not a recommendation. Not looked at details. https://jnnp.bmj.com/content/early/2019/01/31/jnnp-2018-319496
  12. J

    Trial By Error: Who Has the School Study Documents?

    The first thing I would try is to send an email to both FOI departments, copying the responses you have received and saying something like: To both parties, As you can see (below) I have made requests to both authorities and each has said the other is responsible. I wonder if you could please...
  13. J

    Trial By Error: And Another Prebuttal…

    Moderator note: the posts on Sue Pemberton have been moved to the ME show thread here https://www.s4me.info/threads/the-me-show-series-two.7873/page-3#post-148075
  14. J

    Profile of Nathan Douglas athlete who has 'recovered from CFS'

    Not a recommendation. Paywalled here: https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx
  15. J

    The Hans Eysenck affair: Time to correct the scientific record (2019) David F Marks

    This is a powerful editorial by David Marks, asking for the establishment of a National Research Integrity Ombudsperson to investigate allegations of misconduct. https://journals.sagepub.com/doi/full/10.1177/1359105318820931 It accompanies this paper: Personality and fatal diseases...
  16. J

    Relationship btwn CFS, burnout, job satisfaction, social support & age among academics at a tertiary institution (2019) Coetzee et al

    Available here: http://ijomeh.eu/The-relationship-between-chronic-fatigue-syndrome-burnout-job-satisfaction-social,91021,0,2.html Not a recommendation. I have only read the Abstract: What I find interesting there is that there is no correlation between CFS and anything. Also it appears that...
  17. J

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Moderator note: The posts discussing mind and body have been moved to a thread on their own here: https://www.s4me.info/threads/mind-body-and-me.8301/
  18. J

    Blog: "Even the Ethics Committee says the PACE authors should share the patient-level data, so why does PLOS ONE not enforce its regulations...

    I think this may open the door to something and and am mulling over doing something about it. I also have a couple of FOI requests for the data in fairly advanced positions.
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