#SpeakUp: Sheffield ME and Fibromyalgia

Healthwatch Sheffield’s #SpeakUp-funded project supported the Sheffield ME and Fibromyalgia Group to create a short film documenting the 2019 Missing Millions event in Sheffield. The project aimed to raise awareness of Myalgic Encephalomyelitis (ME) and Fibromyalgia, two chronic conditions that participants felt were often misunderstood, under-researched and inadequately recognised. The Missing Millions campaign forms part of an international movement advocating for greater health equity, research investment, clinical understanding and public awareness of ME. 

The event brought together more than 300 people and included speeches, performances, poetry, conversations and a symbolic display representing those whose lives are significantly affected by ME. The funded project enabled the creation of a film documenting the event, extending its reach beyond those who could attend in person. The group highlighted that many people living with ME are too unwell to leave their homes, making online engagement particularly important. The film was viewed more than 20,000 times through social media and other platforms, helping to raise awareness among wider audiences. 

The report emphasised the value of the film as a tool for awareness raising, advocacy and influencing decision-makers. It was intended to help amplify the voices of people living with ME, provide visibility for a condition that participants felt is frequently overlooked and support future campaigning activity. The project also aimed to help people affected by ME feel less isolated by showing that others were working to improve understanding and recognition of the condition. 

While the project was not designed as a consultation exercise, the campaign’s key messages were clearly stated. Participants called for increased biomedical research funding, an end to treatments they considered harmful, improved professional training about ME, and an end to what they viewed as unjustified child protection interventions affecting families of children with ME. The report concluded that the film had created a lasting resource to support awareness raising and advocacy on behalf of people living with the condition.