The MEA is working with Jen Brea and the UK production team on a number of initiatives aimed at the public, health professionals and politicians
With regard to parliamentary awareness, we are looking at options for holding a screening and discussion of the film at Westminster for MPs and members of the House of Lords
CS
Maybe you could also get Nathalie Boulton (Made film Voices from the shadows) to do a talk also?
http://voicesfromtheshadowsfilm.co.uk/news-2/
N.Boulton:
"I have a long experience of family members having ME. My mother had ME until her death, following a severe relapse 11 years ago; I am a carer for my daughter who has been severely ill for 26 years, since she was a child; and my youngest son was diagnosed with ME last year."
"Among her friends who would appear to have been accurately diagnosed with ME/CFS, anaemia, Vitamin D deficiency, and osteoporosis are common, but what is shocking is that often this was only discovered when the
patients themselves insisted on tests! An interesting recent development has been the discovery that many of Anna’s ME friends also suffer from
POTs, hyperflexibility / EDS, and food and environmental sensitivities, or Mast Cell Activation Disorder. This constellation of conditions is poorly recognised in the UK.."
"‘'
the politics of research funding’:.........."universities’ requirement that researchers win large research grants in order to keep their jobs. This involves presenting the research to auditors as socially useful within a five year framework.
"Another complication is that
senior researchers are often called upon to validate party political agendas rather than remaining objective."
"This recent BBC news quote by the paediatrician
Dr Esther Crawley fills me with alarm. 'Children attending my specialist service only attend two days a week of school on average. This means that only the most severe cases are getting help.'
Even NICE describes severe CFS/ME patients as housebound and may need help with all aspects of self-care. So why claim these relatively active children are ‘the most severe cases’, and that ‘the most severe cases’ are getting help?"
"So when I consider the future for Anna and her friends and for the younger generation of children with ME, I am horrified. I am horrified at the
inexorable expansion of the destructive influence of a self-perpetuating CFS/ME research and delivery mechanism, involving a Russell Group University, a very large paediatric CFS centre with outposts around the country and a children’s charity – with support from the Science Media Centre, and even the CFS/ME Research Collaborative!"
see also on FB
https://www.facebook.com/Voicesfrom...AETfCz_TWtSFFskqQ3jHMqkqaRIVz7c3nUc3LnTt8_1mg