Dialogues for a neglected illness project

 

Dialogues for a neglected illness is a new project supported by an award from the Wellcome Public Engagement Fund 2018-2021.

Natalie Boulton, Project Director

 

It will consist of a website with a series of short videos and links to existing material, creating a multi-faceted picture of ME – covering different aspects of the illness from both patient and professional perspectives, and the issues that have engulfed them.

 

This much-needed project builds trust and empowers those with a complex, multisystem, neglected illness to participate alongside researchers and doctors in creating a trusted and enlightening resource.

Research into Myalgic Encephalomyelitis and Chronic Fatigue Syndrome has been severely hampered by stigma, reliance on ill-defined subjective symptoms, underfunded and poorly focused.

It has contributed little to the wellbeing of patients. A paucity of medical education and negative publicity has been detrimental to patients and adversely impacted research. The severely ill remain invisible and neglected. (from Grant abstract)

Josh Biggs, Project Director

It will involve interviews and input from doctors, researchers, patients and carers, to make a resource which will be of use in enabling patients to help their doctors and other health, education and research professionals understand more about their illness and the issues they face.

The Voices from the shadows site is a temporary home for videos for this project, so they can be viewed as soon as possible. A new website will be set up with the videos and accompanying background information, then they will be made available on other websites: Cure ME at the London School of Hygiene and Tropical Medicine and the ME Research UK website.

The first of many videos:

  • Understanding Graded Exercise Therapy for ME/CFS. Part One   [9 mins]
  • Understanding Graded Exercise Therapy for ME/CFS. Part Two: The PACE Trial   [9 mins]

Contributors:

  • Workwell Team: Staci Stevens; Dr Chris Snell; Mark VanNess
  • Brian Hughes  Professor of Psychology, NUI Galway
  • Jonathan Edwards, Professor of Medicine, UCL

See the website for the videos and more Resources

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