ME in York – Film Showing at City Screen York on 1st November
October 25, 2017
Last week, Julian was looking into the impact of Myalgic Encephalomyelitis (ME) in York, and engaging with the York ME Community, the local support group for those affected by this illness.
ME affects around 800 people in the York area, and an estimated 250,000 across the country. It is a very serious and debilitating condition, with symptoms including profound and disabling fatigue, impaired brain functioning, pain, sleep problems, and can leave many sufferers bed-bound. The exact causes of ME remain unknown, and there is no cure, with treatments focusing on relief of symptoms. The condition is far more common among women than men, and the peak age for onset is between the mid-20s and mid-40s. The cost to the UK economy has been estimated at over £3 billion a year.
Julian has discussed the position in York with Bill Clayton of the York ME Community, who have emphasised that one of the most important ways of addressing ME is to raise general awareness of the condition. Give the unclear origins and broad symptoms of this illness, and the fact its impact on suffers can often be more ‘invisible’ than similarly debilitating conditions, there is still a long way to go to ensure that ME and the burden it imposes is properly recognised across society. The Yorkshire Fatigue Clinic does valuable work in assisting local residents with ME, and their Therapy Director, Sue Pemberton, is available to go into local workplaces to give talks and provide information.
The new documentary film Unrest provides a vivid illustration of what it is like to cope with ME through the eyes of Jennifer Brea, a US academic who decided to record her experience after being diagnosed with the condition. It is being shown at City Screen York on 1st November, and the York ME Community are eager for as many people to attend as possible in order to raise awareness of the condition across the city.
Julian has taken action to help raise the profile of ME in York, and highlight the way the city could lead the way in marking the International Awareness Day for ME, which falls on 12th May each year. He has written to the Chief Executive of City of York Council, Mary Weastall, to suggest York participates in this during 2018, and how the Council could assist with doing this. He has also contacted the President of the York and North Yorkshire Chamber of Commerce to enquire about the impact of this illness on the city’s businesses, and how they could help raise awareness of ME.
He has also acted on the concerns of several local residents regarding current clinical guidelines on the use of Graded Exercise Therapy (GET) to treat ME, which has led to many sufferers reporting a worsening or symptoms. Julian has written to the Sir Andrew Dillon, the Chief Executive of NICE (National Institute for Health and Care Excellence), the official body responsible for certifying treatments for use by the NHS, to formally raise these concerns.
Julian said: “It is vital to raise the profile of ME in York, and I will do all I can to assist local campaigners and sufferers on this. We are lucky in our city to have an active and creative support group in the York ME Community, and I agree with their view that one of the best ways to raise general awareness is through engagement with local workplaces and businesses. I would encourage anyone who is interested to attend the screening of Unrest on the 1st November, and to get in touch with the York ME Community.
I look forward to hearing back from the Council and Chamber of Commerce, and hope we may be able to organise something in York for ME International Awareness Day 2018.”
For more information from the York ME Community, click here
For more information on the screening of Unrest on 1st November at 8:45pm, click here
**UPDATE** Due to the success of the screening of Unrest on November 1st, there is to be a second screening at 10.50am on Thursday 16th November. Again, this will be shown at City Screen York.