We may be living in fragile political times but the parliamentary 'Unrest' Saje Impact is supporting refers to an award-winning film and campaign rather than any political coup!
Last month we reported on our involvement to support people with Myalgic Encephalomyelitis (ME) and the screening of the film Unrest at a parliamentary reception on 24th October. John Bercow MP is a patron of the ME Association who hosted the event in the Speaker's state rooms along with the Countess of Mar.
Our Director, Sarah Reed had been working with #MEAction to engage people to their MP to demonstrate how the current NHS guidelines are not fit for purpose for people with ME and how deep and wide the problems are. The award-winning film, Unrest, bravely and honestly records one woman's experience of living with ME but also skilfully manages to illuminate the invisible nature of the illness for millions of others who suffer from the illness and misunderstanding worldwide.
The lobbying was an effective strategy with over 50 parliamentarians accepting the invitation. Many who couldn't attend in person reported that they had received many letters from constituents and were concerned to learn of the issues raised.
The Countess of Mar and Dr Charles Shepherd (Medical Adviser to the ME Association) set the scene for the film with a potted history of how understanding ME as an illness lost it's way alongside the economic cost. The film is moving and the issues it raises are troubling, but it was the Q&A session afterwards with Jen Brea who starred, produced and directed the film from her sick bed which was particularly emotionally charged.
The event attracted full cross-party support and many high-profile members of parliament:
It was good to see Stephen Timms MP at the reception. Sarah helped orchestrate a campaign via #MEAction to demonstrate how NICE guidelines had let individuals down and contacted Stephen to table an Early Day Motion (271) calling on NICE to recognise patient experience and international biomedical evidence in a full review.
The film has outperformed even the most ambitious of expectations in the UK. Extra screenings have had to be added to accommodate demand and it topped the documentary charts on iTunes. It has captured the wider public interest with positive interviews and reviews across all major media outlets and is one of 170 documentary films submitted for Oscar consideration.
Saje Impact will continue to work alongside ME charities to ensure better recognition and treatment for people with ME, particularly whilst the National Institute of Clinical Effectiveness (NICE) are conducting a review into their guideline for ME/cfs
Click here for further details about the Unrest film.