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    Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

    I think she has to ensure her funding streams are not cut off. She has mentioned inappropriate peer review previously.
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    May 12th/ME Awareness Month - suggest how S4ME might get involved.

    T shirt bunting sounds good. I may just be getting old but i think it has be be both " in your face" and a bit more controversial. Projecting images/ words onto buildings has been used very effectively in advertising and could be effective if the correct quotes/ images are used. There has been...
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    Children's education

    Yes, i agree re the catching up/ general in efficiency. There is however unrelenting pressure to get your child into school and it can take a long time to get to the point where both parties accept that it dosn' t work, and home tuition, if on offer is 1-4 hrs/ week in limited subjects here with...
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    Children's education

    Thanks @Luther Blissett , i' ll look into this.:)
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    Children's education

    Thanks for the tips. Tymes Trust have been trying since 2012 to enable this provision in Scotland . I am working with Lesley Scott of Tymes Trust - getting clic sargent on board is a means of widening the debate, together with other mums and Nissai. Our education system, whilst having many...
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    Children's education

    Access to education for children with chronic illnesses- As you may know my daughter is manly bedbound and cognitive function is not good. It has been hard for everyone to adjust to this as she was an active, very intelligent child. There is no online educational provision in Scotland, such as...
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    15 Nov 2017 | Invest in ME offering remote-linked robots to children with ME to help end isolation

    I think it is a great asset for primary where there is one teacher and one class - managing it in secondary would be a lot more challenging. The school would have to be very proactive, have a will to manage change, and our experience is that if there is not a ticky box to be ticked, then it will...
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    MUST Fight MUS

    This may not be the right thread, but may be of interest https://dpac.uk.net/2018/02/protest-against-iapt-therapies/
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    M.E. History: United Kingdom, Attempt to pass a bill on myalgic encephalomyelitis into law, 1988

    Yes, but provided a means of " losing it" at least for devolved administration s
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    Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

    Another consideration is the significant overlap ( in my experience more in teenage females) with high functioning Asperger's. This maybe due to altered sulfur pathways. CBT can be a disaster for those with " Aspies"
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    Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

    Unfortunately until we can get alternative arguments into the mainstream this will continue and funds will continue to be mis spent.
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    Investigating the effectiveness ... of FITNET-NHS compared to Activity Management to treat paediatric CFS/ME, 2018, Crawley et al. Protocol

    There has already been quite a damning peer reviewed paper in response to FITNET ( dr simsin and vink?) and if course the virology blogs. This however gets to the new target of housebound and will be tailored to suit that soundbite. NB being in school is not the same as learning at school...
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    Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis (2018) Evans & Jason

    As this is a " systems" condition, whilst onset is important, i think there have to be things in place to create the perfect storm. This condition exploits any inherent weaknesses. Its a common response, but genetics /epigenetics/ past histories may determine the route and where the baseline...
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    M.E. History: United Kingdom, Attempt to pass a bill on myalgic encephalomyelitis into law, 1988

    Perhaps it got lost in the Scottish and Welsh devolution legislation - health is devolved ?
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    Tonight on Dutch TV - ME / CFS documentary

    Small steps. When a paradigm is so ingrained it takes time to get traction. Bit like an iceberg, small cracks until you hit the critical mass moment and the whole thing collapses. ( Note this is a visual allegory i don' t know about iceberg science at all) Hopefully we are seeing a few...
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    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Signed and shared to Facebook groups
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    Research in progress: A Unified Mechanism for Functional Neurological Symptoms, 2015 to 2018, Edwards et al

    If only we had someone replicating/ loolong into the line of Jared Younger' s work https://solvecfs.org/2016-ramsay-research-team-1-update/
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