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...
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...
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.
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...
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"?
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. "...
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!
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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