Voices from the Shadows

All around the world, even now as we speak children are taken from mothers and the gravely ill are sectioned in psychiatric wards. ME/CFS has a torrid history and the medical profession is left useless in its wake, relying then on the tried and true strategy of blaming this enigmatic illness on the patient.

We who suffer with this illness, become cynical and hardened by the constant fight. By the need every day to gather the willpower to choose to keep fighting this unwinnable battle, while on the sidelines the medical profession yells taunts and derision at us. Their inability to puzzle out our illness, makes them condescending and dismissive. They are stymied by  ME/CFS and rather than treating it as a common enemy, they turn on us.

Right now in Spain a very sick child has been taken from her very ill mother. Even though leading Spanish ME specialists have declared that the child has acute ME and should not attend school on days she is too weak. Even though a judge declared that challenges made by the government to remove guardianship from the mother (also sick with ME) was not in the child's best interests. Even then, the Spanish government has taken this child and put her in a psychiatric ward and refused the innocent mother access to her sick child.

In England a man visiting from Canada who was also very ill with ME has been sectioned in a UK hospital. And this is not just a foreign problem. It happens to Australians too. It has happened to two people I know. Likely more, because it is a shameful thing that people do not want to share.


There is an estimated two hundred thousand people in Australia with  ME/CFS.  Of those a likely forty thousand are house or bed bound, silently screaming for help

The film Voices from the Shadows is a documentary film created by family members of a severely ill ME patient. It speaks for those of us who are unheard. It is important viewing for everybody, but crucial viewing for anybody who loves someone with ME/CFS.

Voices from the Shadows Trailer from Josh on Vimeo.

A reviewer from the Chicago Sun Times has written a review almost as moving as the trailer. Scott Jordan Harris ironically is also a soldier in our war. He too has ME. It is worth a read A howl of desperation for those who cannot howl

My record player is emo

We live in a world where we are constantly prompted with subconscious social markers and clues in order to help us behave appropriately and to know what to expect. When you watch a TV show, whether you are aware or not, you will know by the way the camera moves, what type of scene is about to take place. If the camera is watching someone through the branches of a tree you will know that character is being spied on, but if the camera moves slowly from behind the tree and just watches the character from a distance, you will know the character is having a pensive moment and the imagery suggests they are given space.

When you watch a movie, the music or sound will communicate what type of emotion they are prompting from you. The melancholy music or dramatic sound effects getting you ready for the emotion of the upcoming scene. Those of us with severe CFS/ME have a sound-track of atmospheric melancholy music that changes in moments to vintage comedy capers music to coincide with our daily slapstick routine or shifts to threatening thrumming bass as we near death, only slowing down to turn back to melancholy.

There is not often hopeful music, or even a camera panning to the sky to say goodbye, instead the camera discreetly backs out of the room, us in centre screen skin looking translucent white, eyes blackened, lying heavily in bed surrounded by medication having completely given up the pretence of a pretty room for the practical needs of survival. And maybe there is a script in the end credits describing our continuing fight and running statistics on the truth about death and severity of CFS/ME.

The psychology of CFS/ME is not like other illnesses. We do not get given a package of information about statistics and treatment options, the likelihood of survival and how to better our chance to achieve that nor do we get to look forward to the sweet relief of death and the acceptance of having to say goodbye. We do not wish for death, but we wish for closure, for escape from the torture of uncertainty. Our ultimate wish would be to hear hopeful music, see a montage of us over the years in various states of decline and then some miraculous treatment turns us around and you get to see us building up our strength and working to get our lives back.

Unfortunately for most, that is not what our experience is. And what I've realised is I've grown tired of waiting to hear the triumphant music. That I hate my emo record player and it's evil addiction to dark whining notes. What I wish to do is change it, but the ceaselessly moving floor and my inability to walk properly makes it impossible for now.

So I live my life in intervals, small snatches of clarity, tiny moments of balance very rarely free from pain and never free from exhaustion. People around us struggle with the complexity of the psychology of CFS/ME. We struggle to balance on an undulating floor that moves to no discernible rhythm, unwillingly swaying to the atmospheric melancholy siren and wishing to hear a joyous symphony.