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    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Hi, yes I did go. Hilda Bastian had to pull out as her Mum sadly died last week. It was interesting and there are good plans going forward for improvements in trials etc, but no mention of combating previous farces, such as PACE. There was only time for a couple of questions afterwards. There...
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    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    The current page for this event has changed. This is the original, as @Robert 1973 #124 above: ‘Making Science Reproducible: Will this time be different?’ About this Event Fiona Fidler, a philosopher and historian of science at the University of Melbourne is currently investigating the...
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    An Introduction To ME By Dr Hng

    There's an article on the Hope4ME &Fibro NI FB group Announcements page for 25 Jan 2019 I think this is public access. I just remember hearing it had gone well, not much info.
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    Announcing #MillionsMissing 2019! Join us!

    Hi @Gecko. Did not mean to minimise your involvement with organising the great sheffield event. Thanks too for all you are doing with MEAction
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    Boy said to have 'CFS/ME' interviewed on BBC's 'The One Show' 26/02/2019

    i know of several individuals who have written to the BBC. I guess it will be re-rn on the nigh of Comic Relief as well.
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    An Introduction To ME By Dr Hng

    Yes! https://www.facebook.com/groups/drhngsfriends/search/?query=Doctor%20Education%20in%20Manchester&epa=SEARCH_BOX
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    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    Part of this NIH research award work includes: "investigate the Minimal Clinically Important Difference in outcomes; ..........and start the work needed to establish a trial for severely affected children." https://www.fundingawards.nihr.ac.uk/award/SRF-2013-06-013 This award was supposed to...
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    Announcing #MillionsMissing 2019! Join us!

    @chicaguapa organised the Southampton one and @Gecko's Mum was involved with the Sheffield One.
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    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    From abstract above; "This is different to children with mild or moderate CFS/ME who will be able to do carry out most normal childhood activities and are attending at least some school." Does anyone know of moderately affected children who can carry out "most normal childhood activities"?
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    Professor Crawley BPSU study - Chronic fatigue syndrome (CFS) Severe children Feb 2019 - 2020

    She clearly has no idea what severe/moderate means. "Case definition Children aged 5 to 16 years who has been given a clinical diagnosis of CFS/ME with fatigue that is so severe that they are unable to attend school for more than one hour a week during the last 6 weeks of the school term. "...
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    MUS services in UK and other MUS related issues

    This is where Prof Chris Burton is based. He is on the Guideline Development C'ttee for NICE. His book on ABC of MUS includes a chapter on Fatigue by Alison Wearden!
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    World ME Alliance, was previously IAFME: International Alliance for ME

    I think Esme is one of the judges on the great British Sewing Bee!
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    Illness perceptions in adolescents with CFS (2019) Cara Haines, Maria Loades, Cara Davis

    WaLoC model. (What a Load of....) No data in the abstract and no meaningful data in the full paper, no doubt.
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    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Hi Saran, thank you so much for doing this. I am sorry you have been ill for a long time. My daughter, now 24, has been ill for 8 years, and moderately affected. "Fortunately" my daughter was 16, when diagnosed, so we escaped the threats of being referred to social services etc. I am on a...
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