Voices from the Shadows, a Film About ME/CFS From the UK

People with visible and invisible disabilities are often not only discriminated against, but far too often abused. Some of the abuse is from ignorance. Other times it is systemic and sometimes it is political.

ME/CFS, FM, and MCS/ES are often overlapping conditions. Canadian diagnosis stats with more details are here or a simple chart is at the bottom of the page here.

There are 3 dedicated clinics in Canada for diagnosing these conditions (and more, such as EHS). One is in Toronto (with a perpetual long wait list) and a new one just opened in BC with Dr Bested as the clinic director and was immediately overwhelmed with people seeking appointments. There is also one in  N.S.

Some provinces have a diagnostic code for ME/CFS now, and for FM, but not for MCS/ES. The CDC has also recognized it. In the US, people can look for doctors on the AAEM website. (there may be others, I am not as familiar with the US resources).

People in the UK and elsewhere are still trying to get proper recognition and protocols in place so that patients there are also not subjected to more abuse on top of these already devastating conditions.

Watch the trailer of the film here, then  you can link to the full length film from the Voices from the Shadows website.

“We realized that one of the problems is that severely ill patients with ME become completely isolated and invisible to the world at large. Few people see them when they are housebound and bed bound. They are too ill to take part in most research projects and so very few people are aware of the severity and nature of the illness. …

Sadly our work on ‘Lost Voices’ did not prepare us for the shocking revelations that came to light when we spoke to patients, carers and doctors: the abuse of children and patients.”

Voices from the Shadows: Introduction

For more info: http://voicesfromtheshadowsfilm.co.uk/me-cfs-and-research/

There is a lot of suffering due to these conditions, and very little safe and knowledgeable assistance to guide and assist affected people with what to do and what not to do in order to  have as good care and quality of life  as is possible. Better medical education, training and laws are required.