taniaaust1
Senior Member
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- 13,054
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- Sth Australia
. A bit more on patient care: How many of us are without a doctor because we're sick with ME/CFS and for only that reason? How many of us don't have even one ME/CFS expert in our whole state or country?
I can answer "me" to those things but " How many of us are getting worse because we have no local medical care?"
As there is no current treatment which works for all, how can you even know you would be getting better if you had local medical care? In my case the lack of the whole government services not under standing ME stops me from being able to get any home help for ME and it is that which is causing my condition to decline. Even if I was seeing a good specialist I still would be declining due to having to over do things all the time just to live.
I've seen 6-7 CFS specialists who offer the current standard ME/CFS care and they have been of little help to me so far., sure some of my symptoms are helped by drugs but Im still unable to do much at all. The only way current standard care will improve is by research either supporting the things which are currently "fringe" things to the rest of the medical profession or in finding new treatments.
My current situation is the main reason I'm determined to change things. But many others are in an even worse position and can't even speak out. My situation could be helped by local medical care. If I manage to find another doctor soon, it will prevent a crash. If I don't ....??? Good research is very important. But good research takes time to do and more time to apply. I'd guess that many of us have funding research in their top goals. This conversation has echoed that message. But a local doctor could help this month.
"maybe" a local doctor could help you this month but what if you get worst or get new symptoms which they cant treat now. There are many ME symptoms they cant treat at all. I get over 90 different symptoms with the ME and even the ones I have which are treatable, are proving to be extremely hard to treat eg Im on Florinef and Clonidine for POTS but still need to be pushed in a wheelchair when taken out shopping.
Im currently back to having to sleep in afternoons too and there is not treatment at all for that. So once again it comes back to research, many of us cant get good care till more research is done so we have more options for treatment.