Festival, USA, Saturday 8th October2011*
The reason we participated in the film is because we want the secret
suffering of people with Severe ME to be seen and respected properly,
rather than the common media image of ME which is portrayed only as Chronic
Fatigue, as being "tired all the time" with perhaps a sore throat, or
The representation of ME has a form of depression by the media has done so
much damage, in ordinary people's understanding and image of people with
Depression is the last thing you have in Severe ME ; in order to cope, to
survive, you have to maintain your internal integrity and sense of who you
are in the face of an horrendous onslaught of disabling
and debilitating neurological symptoms,which tend to be omitted from the
popular image of ME, but ultimately is what the disease is all about.
If you have not got neurological symptoms , you do not have ME ; that
reality is neglected to such an extent that biomedical tests and treatments
are completely ignored, even refused to ME patients and they are treated
as malingerers and nutcases, people who just aren't trying hard enough, who
somehow are at fault for just being ill.
If somebody says they have Cancer, they will receive compassion, concern and
support from the medical profession, Social Services, society; if they
manage to walk about, to engage in social activities, they are somehow seen
as heroic , whereas the person who has Severe ME, who struggles to engage
with ordinary life, every moment of every day, but may be able
to occasionally interact , is more likely to be misinterpreted as being not
really ill and not needing the help and understanding which is critical for
them to survive.
Let us hope this film brings about a radical shift in people's awareness of
serious neurological nature of this neurological disease and the need for
Let us hope that the truth will be finally heard that ME is not a
psychiatric illness and should not be treated as such.
We believe it is not possible for anyone, with any spark of humanity, to
watch Voices From the Shadows and not emerge profoundly shocked , outraged
at what the psychiatric lobby have done ; it is gut-wrenching.
(Link to the premiere : http://mvff2011.inticketing.com/films/166223)
Linda and Greg Crowhurst
(The Lived Experience of Severe ME)