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    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    Chat on some FB pages today re The Last Leg ( new series starts tonight) - PACE, DWP, kids and GET - could this break into mainstream ?
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    Corticosteroid binding globulin deficiency

    Interesting. How low does cortisol (and blood pressure) have to be for this to be considered?
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    ME severity scales - discussion

    This
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    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Mmm- the self reported school attendance and lots of long term follow up missing data. I really wonder when the " penny drop" moment will happen .
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    A cluster analysis of serious adverse event reports after (HPV) vaccination in Danish girls and young women, Sept 2009 to Aug 2017, 2019, Ward et al

    perhaps to counter Geotzsche?
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    Questions for the CureME/UK ME/CFS Biobank team, what do you want to ask? [June 2019 Q&A]

    Given limited geographical reach could a licensed network of biobanks be established- perhaps linked to research establishments? Is there a known difference, in gene expression, between rural and urban patients? Given pesticide and organophosphate use there may be differences? Or perhaps this...
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    Measurements of Recovery and Predictors of Outcome in an Untreated CFS Sample (2019) Thomas et al.

    Who are trustees . Interests and network may shed some light. They also funded SMILE from memory
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    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    They didn't need to look at the data - FINE data would have flagged up problems. Eta - responded prior to reading rest of thread
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    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Thank you @dave30th .
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    ME severity scales - discussion

    I would agree re mild in particular. Education have difficulties construing the level of disability for mild. It is not like "mild diabetes", " mild asthma", it requires a totally different mindset.
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    I’m A Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew (HuffPost)

    This should be part of syllabus for medicine students - a day' s experience.
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    ME severity scales - discussion

    Given the use of numerical scales for other conditions this may make things more readily comprehensible
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    Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review (2019) Ahmed et al

    Seems particularly weird given his input on GWI
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    More PACE trial data released

    does this mean that @Chris Ponting will be able to access it?
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    May 2019 - Awareness Week including Millions Missing

    Great video @JaimeS - gets prevalence/ funding issue across.
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    Prof Chris Ponting's stirring speech about reseach at Glasgow Millions Mission event

    Thank you @Chris Ponting
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    May 2019 - Awareness Week including Millions Missing

    Link to smugmug with Glasgow pics. The pandas area reference to the lack of specislists - there are more pandas in scotland (2) than specialists for ME (1) https://meaction.smugmug.com/MillionsMissing-2019/United-Kingdom/GLASGOW/
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    May 2019 - Awareness Week including Millions Missing

    Great statistical reference- should enable it to hit home a bit better
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    The Independent - What are the symptoms of ME and how is it treated? May 2019

    This is where ME missed the boat again. A once a year opportunity to gain mainstream coverage and there is no coordinated statement on behalf of PWME; numerous soundbites of slightly contradictory information that can turn people off / reinforce stereotypes. This is where Valerie Elliot Smith's...
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    Building an evidence base for management of severe ME (including sleep management)

    How many moderate / severe patients take supplements? I suspect there are common combinations, but overall these may be idiosyncratic. How to you modulate for these? Do you take these into assessment? Eg my aunt is bedbound. She had horrendous tachicardic episodes. Injected magnesium has...
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