A sea of compromise

We're all swimming in a sea of compromise, called " chronic fatigue syndrome"  and floundering right in the middle of it are the most Severely Affected; it's a right mess.

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.


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