Nobody sees the people who are most ill, nobody hears from them. The ones who have the most severe neurological symptoms are invisible; while there are many wrongly diagnosed people who think they have ME . It is not helping.
Thank God for Natalie Bolton's forthcoming film : "Voices from the Shadows." It has shaken me to the core; I am shaken still by it. If anything has the power to make the difference, it is this footage of unadulterated torture .
There really is a vast difference in the experience of the Severely Affected sufferer who is extremely incapaciatated all the time and that of someone who is tired all the time.
Whoever heard of a disease where the most Severely Affected are offered nothing and the less Severely Affected are poorly defined by an ambiguous diagnosis that makes it impossible to say who has ME ?
I am stirred by the recent comments on our post "Where are the Strong Voices ?" to speak out.
After all this time I am no longer interested in ME politics. Of course I care that people are suffering. but my concern, my focus , everything is upon my wife's hideous daily experience and I am fighting the fight of my life for her.
What label to use ? It couldn't be simpler for the Severely Affected : "ME"; all else, including the much-needed insurgency, follows. If you haven't got the neurological symptoms, then you just don't have it.