we néed a new, more accurate, name for cfs and for fibro, to better reflect the epidemiology/ treatment/ pathology of these diseases
this will simply 1. be more accurate 2. bring about better perception by health carers and therefore better approaches in treatment and handling 3. help patients be more comfy with a less vague disease title [syndrome just means 'we dunno'] 4. allow the rest of the well public to understand a bit more and then perceive sufferers more realistically and helpfully. all of the above then eventually contributing to a future of better understanding and relief of isolation.
just to let you know what i'm thinking. i'm in the preliminary stage of getting some documents written on these matters, to present to support groups and medical bodies, to initiate change and improvement.
cfs > VIRAL FATIGUE SYNDROME
or POST-VIRAL EXHAUSTION
this sort of thing.
'viral' will give more of a cause rather than 'she's mysteriously tired (or just doesn't want to work)
'exhaustion' will better describe what actually is, rather than 'fatigue', which, when most people experience (non-viral) fatigue, they just sleep it off - which we can not! we are EXHAUSTED.
fibromyalgia > AUTO IMMUNE DYSFUNCTION
this will stop any perceptions/ accusations that it's psychosomatic and in our #%^*€g heads. we KNOW it's an immune system reaction, we need that included in the title.
i hope i'm