Dialogues for a neglected illness is being made with an award from the Wellcome Public Engagement Fund – 2018-21. The project is led by Natalie Boulton, working with Josh Biggs, a professional editor and cameraman. It is evolving as we work on it, adapting to the new conditions caused by a pandemic! Members of the Cure ME team at the London School of Hygiene and Tropical Medicine – Luis Nacul, Eliana Lacerda and Caroline Kingdon – were clinical and research consultants until the pandemic complicated all our lives and the project had to adapt. All medical and scientific input is checked with the professionals interviewed before being made public. Advice and feedback is also provided by patients and carers at all stages, as an integral part of the project. Particular thanks is given to patient/carer advocates – Mary Dimmock, Graham McPhee, Valerie Eliot Smith, Sue Waddle and Rob.
The collection of videos covers a variety of topics, giving a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, and research professionals specialising in ME/CFS. Importantly it also features the experiences of patients and carers – with about a dozen patients interviewed, including donors from the UK ME/CFS Biobank and patient advocates. The project is a resource which appears to be filling a gap, as the videos are being hosted or linked to by UK charities (ME Research UK and ME Association) and included in medical education resources both in the UK and the US. (Study PRN continuing professional education, the US ME/CFS Clinicians Coalition, Workwell Foundation and Healthcare Special Issue: Severe ME)
It is a resource which patients can use to increase their own understanding and those of their families, friends and carers, as well as helping doctors, medical students, physios, OTs, social workers, carers, educators and research professionals, understand more about this disease and the issues involved.
The film is available to watch FOR FREE using the following code “VOICES”
‘Voices from the Shadows’ shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011, by the brother and mother of an ME patient in the UK. It shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections.
A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occur.
‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues – from parliament buildings to cinemas, universities and homes – from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014.
Jennifer Brea’s Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller. Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. When doctors tell her it’s “all in her head,” she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned.
In A Night of Unrest, health professionals speak about Myalgic Encephalomyelitis after the screening of the movie documentary, Unrest. They offer insights on how to help patients and families manage and cope with this disease and share some of the latest research from the National Centre of Neuroimmunology and Emerging Diseases.
Ryan Prior’s life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat. Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery. He is shocked that millions globally remain sidelined by the same disease, many bedridden for decades.
Forgotten Plague is a journey into the hidden world of myalgic encephalomyelitis. It is a chilling tale of our medical system’s failures in addressing many chronic, complex diseases. Yet it is also a riveting story of science’s remarkable ability to transform medicine and improve human life itself.