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  1. M

    News from Scandinavia

    is there any update on how Maria Gjerpe is doing now?
  2. M

    MUS services in UK and other MUS related issues

    https://paedmhassoc.files.wordpress.com/2018/11/mus-guide-with-leaflet-nov-2018.pdf p5 "Think about MUS if: 1. Your patient has undergone an unusual level of investigations and/or been to a significant number of hospital specialists relative to their diagnosis (remember MUS can also occur in...
  3. M

    #MEAction: A response to Dr Mark Porter’s article about ME in The Times

    Seems to have picked up the BPS habit of "have you read the paper/did you read the whole thing..."
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    #MEAction: A response to Dr Mark Porter’s article about ME in The Times

    Have just replied to the above tweet ...if the article is about chronic fatigue, then why is the headline "Treatment for Chronic Fatigue Syndrome...?"
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    Brian Hughes - If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*

    Wesseley's remarks above, from: "confusion between an illness belief, usually self-diagnosed, and a reproducible, reliable, exclusive case definition [12]." I wonder which case definition/diagnostic criteria/name of illness this refers to? I cannot think of one that the BPS crowd have thought...
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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.
  9. M

    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.
  11. M

    An Introduction To ME By Dr Hng

    Yes! https://www.facebook.com/groups/drhngsfriends/search/?query=Doctor%20Education%20in%20Manchester&epa=SEARCH_BOX
  12. M

    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...
  13. M

    Announcing #MillionsMissing 2019! Join us!

    @chicaguapa organised the Southampton one and @Gecko's Mum was involved with the Sheffield One.
  14. M

    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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