Thursday, 20 February 2014

Bristol Exercise and ME/CFS evening a success

The ‘Exercise and ME/CFS – the evidence’ evening in Bristol went extremely well. It was oversubscribed  - completely packed with around 120 people – despite terrible weather, massive traffic jams and extensive flooding in Somerset. Prof Mark VanNess, Dr Nigel Speight and Erinna Bowman all gave very good presentations after a 30 min version of ‘Voices’ showing 4 young people’s stories of how mismanagement of their illness had caused severe deterioration in their health. The event was filmed and will be available to watch online soon. There were professionals from three CFS/ME centres –  Bristol adults, Bath children and adults and Somerset CFS Service – as well as from two Bristol Universities, a wide variety of other medical professionals, disability advisors and many patients, carers and parents from nearby and far afield.

Thank you to all those who helped in various ways – to Joan McParland who spent two years planning how to bring Mark VanNess to the UK, to Shass Blake whose North Bristol Support Group hosted the event, to the Quartet Foundation who gave a substantial grant, to MERUK who helped fund their spokesperson Sue Waddle who chaired the event, to the ME Association for helping fund Dr Nigel Speight their paediatric Medical Advisor and Erinna Bowman from the Biobank’s expenses. Thank you to Duncan Cox, Cath Ross, Nicki Strong & Sandy Shott for helping in different ways and to the families who offered financial help, if needed. Thank you especially to Nigel, Sue and Erinna who give their time so freely and repeatedly to help patients. The feedback after the event from both medical professionals and patients and carers has been excellent. The presentations are being prepared for viewing and will be available to watch here very soon. Prof Mark VanNess’s presentation will also soon be available on the Workwell Foundation website, but in the meantime they have  presentations available by other members of the research team – Chris Snell and Staci Stevens – under video links.

Introduction to the film shown on Feb 5th. at the Watershed - Natalie Boulton

We finished the ‘Voices from the Shadows’ film 2 and  half years ago and actually started it a couple of years before that, so most of the interviews are now quite old. Unfortunately they are no less relevant now than they were then, as Nigel will explain later.

The first interview we did, was with Simon Lawrence who founded and runs the 25% Group for severely ill ME patients. It was difficult to film and he was far more ill than we’d expected.  One of the things he said, that I didn’t really want to hear, was that over the years he had seen many, many people progressively become more and more ill  and many had died – he had lost many friends, he said, although, this was invariably put down to other conditions as being the cause of death.

Over the last 6 or more years I have been in contact on and off with a small group of young people, through my daughter, most of whom took part in the book Lost Voices from a Hidden Illness or the film. They mostly became ill as children or young adults. I have seen or rather heard of their progress over the years. Two of these, who were my daughters friends, are now dead. Another who I keep in quite close contact with has gone from being up on his feet and going out for short trips, to being completely bed bound, unable to get to the the toilet even with an electric wheelchair, unable to watch a computer screen or TV, unable to read and unable to have his hair cut or to shave – as you will see in his photo in the film.

This is a shocking film. But when we started to do the interviews we had absolutely no idea how shocking and frightening the accounts would be. I thought, from making the the ‘Lost Voices’ book that I had some idea of what was going on – but what we were told in interviews was a revelation. It became clear that these accounts were part of a coherent picture that needed to be told – The story of how physically ill children and young people, had been encouraged, persuaded, coerced, and even physically forced as a last resort, to conform to a view of this illness which is now proved to be utterly misguided and false -  even though it is still being widely promoted.

This 30 minute version of the film contains 4 accounts of young people with ME. There is Naomi who tells her own experiences along with her mother Elizabeth and her brother and sister. Kay Gilderdale recounts how her daughter became so severely ill, Criona tells us what happened to her daughter Sophia. Sophia herself recorded some of the material we used. The child we refer to as B needs to remain unidentifiable and remains severely ill and traumatised by what was done to her. The room shown is not even her own room, we created it largely using my daughters possessions but I am told it is surprisingly similar. The account her parents wrote is read by an actor. Photos of other severely ill young people are shown while the ME specialists speak.

This film makes an impact on people, not because it is particularly well made, but because of the total sincerity and honesty of the people in it. We filmed them as witnesses, to hear what they needed to say, not to make an argument – and a tragic story emerged.

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