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.
explaining myself ok; i just know from my experience that perhaps maybe half of my hurt/ pain/ agony/ grief has been from lack of understanding of my illnesses, the first 5 months of it being on the part of medics who gave me bum advice and quack treatment - less of which might have happened had there been better understanding of the disease - which there might have been more of had the disease title been more accurate and descriptive so referral might have been more accessible.
I couldnt agree more with you about the term chronic fatigue syndrome not being an accurate description of what people diagnosed with it go through but then I am one of those people who believe that the diagnosis of CFS is given because doctors dont know what else to call it or in my case are not interested in finding out what is really behind the life changing exhaustion and pain. In my case it was psoriatic arthritis (no skin involvement now but did have skin problems years ago) that was causing my pain and I only got diagnosed by doing my own research and spending my savings on private treatment here in Ireland. We have socialised health care but its chaotic and if tests are negative you'r just not going to get help. I keep raising this on boards because I firmly believe there are lots of people who are dumped out of health care systems especially public systems where there is no second opinion sought and where you have no say in your treatment. I know what it feels like to be told you have a condition that no one understands, half the medical community think its depression and that alternative medicine and quack practitioners make a fortune out of. There is always a reason for everything that happens and what we need is more research and doctors that listen to patients and of course a proper name for a life changing condition. Good luck to you acker but I'd say there's a long road ahead......
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