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    Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with CFS (2019) Josev

    Perhaps tangentially supporting the glucose problem. If your glucose energy production system is screwed, would lack of starting energy not be a given ?
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    Building an evidence base for management of severe ME (including sleep management)

    Just as there is a distinct difference between fatigue and fatiguability, the nuance of which esacpes almost every doctor we have seen
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    Whilst other research shows ...
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    RCPCH conference 2019 abstract: Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas, Bashton et al

    Have these folks not heard of carbs and glycolysis?
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    ME/CFS contributions at Royal College of Paediatrics and Child Health conference, May 2019

    She must have been a good teacher.
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    I do wonder about choice in an asymmetric power situation. Many kids agree to things to either " please" the authority figure, or in the hope it makes them/ the situation go away. If you are in an intensive therapy environment , ( do you have parents/ advocates?) , how much control do you...
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    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    When professionals still do not understand PEM, what chance do kids and their parents stand? It' s the same crass supposition that " fatigue" is the most important aspect- that somehow cognitive function is not an intrinsic part of an energy envelope :banghead:
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    ME/CFS contributions at Royal College of Paediatrics and Child Health conference, May 2019

    Mmm. Cake and chat. Becoming cynical but would this not fit very nicely within the service provision tender criteria currently extended for NICE?
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    RCPCH conference 2019 abstract: Characteristics of a patient population attending a specialist outpatient service for CFS, McCourt et al

    Given that this age group has a better prognosis for recovery , without intervention, ( does this ever get allowed for as a variable ?) seems that more trees have been killed in vain ( To put it diplomatically) .
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    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    No. A lot of parents commenting and separate post re PACE and DWP benefits denials. I' ll watch tonight and see if there is a mention / reference.
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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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