VOICES FROM THE SHADOWS (2011)

Directed by Natalie Boulton & Josh Biggs

Film Synopsis

Voices from the Shadows tells the brave and sometimes heartrending stories of five ME (myalgic encephalomyelitis) patients and their caregivers. Directed by the brother and mother of an ME patient in the UK, the film shows the devastating consequences that occur when patients are disbelieved and an illness is misunderstood.

Active Cinema Participation

At MVFF 2011, the film:

  • had its world premiere
  • had a sold-out screening
  • was presented in association with the Bay Area CFS Support Group
  • was followed by a panel discussion with Dr. Jose Montoya, the Director of the Infection-Associated Chronic Fatigue Initiative at Stanford Medical School
  • won the Audience Favorite Award for Best International Documentary

Active Cinema Impact

After being part of Active Cinema:

  • The filmmakers produced a full-length version of the film, subtitled in nine languages and distributed around the world.
  • The filmmakers produced a 30-minute version of the film, which was shown at the first ME/CFS research symposium at Stanford University in 2014. The screening included three journalists and filmmaker/caregiver Natalie Boulton speaking about the influence of the media on perceptions of the illness.
  • The film has been used for advocacy, with screenings around the world: http://voicesfromtheshadowsfilm.co.uk/screenings/
  • Groups in Japan, Northern Ireland, and Sweden have been especially active in using the film for advocacy, including arranging screenings for Parliamentarians.
  • The film has been used by many charities worldwide in their educational work.
  • The film has been used by many severely ill individuals and/or their caregivers worldwide to bring about positive changes in the way others relate to them and the quality of care they receive.
  • The film has been used by those fighting abuse of patients around the world
  • There is now much more interest in and recognition of the severity of the illness and the importance of researching it.

Professor Leonard Jason, Director of the Center for Community Research at DePaul University has written:
“The reach of this riveting film has been extraordinary, and it has significantly influenced the debate on seriously ill youth with ME. This moving documentary has been like a shot heard around the world as it has precipitated an increasing awareness of the severely ill and highlighted the prejudice against patients and the unwitting but pernicious harm done by too many health care professionals.”

From the Filmmakers

“Having our premiere at MVFF made a phenomenal difference in giving the film a level of recognition and publicity which it would not otherwise have received… The recognition from the Audience Award, along with the medical validation that came from the support of Dr. Montoya, who runs the ME CFS research initiative at Stanford, was extremely important in encouraging others to use the film in their own advocacy work. I was later told by one Stanford researcher that seeing the film at MVFF had been key in getting him involved in important research into the illness.

As Josh and I were novice filmmakers, and I’m a full time caregiver, we haven’t had the time or resources to do a lot of outreach work ourselves. We depended on other individuals and groups using the film in their own advocacy and educational efforts. MVFF and the Active Cinema program were absolutely crucial in enabling that to happen.

Attending MVFF opened my eyes to the fact that making the film was just the start of the project! It gave me the encouragement and energy to work at getting the film out to individuals and groups over the next few years and to help them make the most of it. As a full time caregiver this would have been difficult to undertake without the experience of being at MVFF.”

How to See the Film

It can currently be viewed on Vimeo ($3.00 for one-week access):

https://vimeo.com/ondemand/22513

How to Stay Active

Ending the abuse of patients with ME/CFS and the promotion of harmful treatment programs depends on more and better quality research being undertaken. Accurate diagnosis and effective treatments for different subsets need to be developed. There is little funding from the CDC and NIH, so most research depends on private funding.

There are several very good research programs in California for people to support and learn more about the illness, including:

Stanford University ME/CFS Initiative research group: http://med.stanford.edu/chronicfatiguesyndrome.html

Open Medicine Foundation: http://www.openmedicinefoundation.org

Donations to help children with ME who have been taken from their families can be made at: http://www.geef.nl/doel/save4children

Visit the film’s website for more information: http://voicesfromtheshadowsfilm.co.uk

Follow the film on Facebook at: https://www.facebook.com/VoicesfromtheShadows