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    Building an evidence base for management of severe ME (including sleep management)

    Track it with batch calibrated fitbit type devices and you may get an insight on usefulness re each approach from HR and sleep data. How you feel you sleep and how you actually sleep can be entirely different things.
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    The Week: I'm a 40-year-old stay-at-home kid - and it isn't so bad

    I don' t know. It was an early story in her MAIMES campaign so I assume that she is still here.
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    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    Sadly people are living longer
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    UK Teach Primary Magazine: 'A heavy weight to carry' by Claire Tripp, 2019

    @chicaguapa . There are subtle differences in Scottish system re additional support needs ( eg don' t have SENCOs , EHCPs etc - different support plans and roles and the whole GIRFEC agenda) - if following up with more detail, or in more depth for secondary it may be worth bouncing it off...
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    UK Teach Primary Magazine: 'A heavy weight to carry' by Claire Tripp, 2019

    I' ve emailed a link to our council " quality improvement officer." She was a secondary head and very good at responding to all things educational.
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    The Week: I'm a 40-year-old stay-at-home kid - and it isn't so bad

    Yes. I' m hoping this is one that will be investigated.
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    NZ Listener - Ills thought out - Wilson 2019

    Renamed as .... Schroedinger' s Disease ... Eta Or is this a manifestation of a double bind situation ?
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    Genetic Predisposition for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study 2019 Perez Nathanson Klimas et al

    @BeautifulDay
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    Do ME symptoms fit with the faulty energy metabolism hypothesis?

    Would signalling not be more to do with uncoupling the supply and demand side of ATP production ?
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    Do ME symptoms fit with the faulty energy metabolism hypothesis?

    To be demonstrative should this not be done before and 24, 48 hours after exercise ?
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    Dr Karl Morten - UK researcher based at Oxford University

    What does the difference in results after 24 hrs mean. If there is a clear difference to healthy controls after 24 hours would even that not imply something awry?
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    The Week: I'm a 40-year-old stay-at-home kid - and it isn't so bad

    This reminds me of a comment from Myhill' s MAIMES campaign. A husband had ME, basically bedbound His wife was his carer and asked for care to be put in place for him whilst she went into hospital for treatment ( from memory a 2 week inpatient stay - but could be wrong ). No family members...
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    Cognitive behavioural therapy for ME/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review, 2019, Vink & Vink-Niese

    SMILE needs to be demolished to achieve that. If all you did was scan abstracts for evidence bases it would provide a " credible" alternative. Mr Parker is about to cash in. Who funded SMILE ?
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    More PACE trial data released

    To have achieved this in full health would gave been difficult. To do so with ME is amazing. I think you need to pick your superhero cloak colour !
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    The pathway from glandular fever to chronic fatigue syndrome, 2011, Moss-Morris et al

    Boom or bust by another name
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    Article: The alarming hijacking of the BioPsychoSocial model

    From Twitter https://holeousia.com/2019/05/05/what-we-believe-in/amp/?__twitter_impression=true
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    General news about Fabricated and Induced Illness syndrome (FII)

    https://www.coyneoftherealm.com/2017/11/15/stop-using-the-adverse-childhood-experiences-checklist-to-make-claims-about-trauma-causing-physical-and-mental-health-problems/
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    General news about Fabricated and Induced Illness syndrome (FII)

    Sadly in many spheres, assessment is reduced to tick boxes with little room for interpretation. Lack of knowledge can also be significant. Check out Coynes blogpost on ACEs to get a feel for how bad things are. There is currently huge investment in ACEs .
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    Myalgia and CFS following immunization: macrophagic myofasciitis and animal studies support linkage to aluminum adjuvant persistency, 2019, Gheradi

    I think it may be " in the mix" I have a client who had tetanus jag just prior to onset, my aunt had multiple vaccinations for travel, and there are many girls with ME and or/POTS following HPV- which has a high adjuvent load.
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    General news about Fabricated and Induced Illness syndrome (FII)

    In my inbox, for info - growth industry https://www.openforumevents.co.uk/events/2019/safeguarding-children-promoting-welfare-preventing-harm/?utm_source=OFE+S2+SGC19+OC+03.05.2019&utm_medium=email&utm_campaign=OFE+S2+SGC19+OC+03.05.2019
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