@heapsreal I didn't realize it was like this in Oz. I suppose I have been reading a lot of PR and assuming we had similar options to US citizens.
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The states of Australia really vary too as far as ME/CFS goes. Western Australia is a terrible state for it, my cousin is there and she never got a ME diagnoses even thou she has severe ME and saw lots of doctors and specialists and ended up on a disability pension at 17-18 years old for an "unknown" illness.
She found in WA all the doctors and that she saw believed ME/CFS was a psych illness and hence they wouldnt diagnose her with it as they could see she ws very ill. (she had been an athlete with a scholorship at the WA institute of sport. she had been hoping to be in the olympics). I guess the doctors think only lazy people get ME/CFS too and hence she didnt qualify.
East Australia is the better states for this illness, they even get things like heating and cooling rebate if you have ME/CFS and problems with heat there. In SA.. that is a discluded illness for it and I cant get even thou I go unconscious in the heat and have ended up in hospital needing a drip when Ive got too heat affected.
All the better doctors for ME are on the East side of Australia. SA doctors are "CFS" ones.. believers in the PACE trial and that CBT may help thou we have no CBT experts here for CFS so one is never sent to one for CFS (thank God for that) . I find CFS doctors still helpful as at least throu those if one pushes them hard enough if you can find the energy to do that, one may be able to get some treatment for a few symptoms. (before I found CFS specialists, I got no treatment at all for anything)
CFS specialists are interesting too as each has their own little interest area...eg one of mine thinks CFS is caused by food issues (he's right into insulin issues so had me tested for those and I did have hyperinsulinemia), another thought that half of causes were due to rickettsia so used to test all his CFS patients for that (half of them in Adelaide had that but not me..that's one thing you may want to put down on your list for maybe one day testing), another his area of CFS interest is hormones and MTHFR issues.
I ended up with 3- 4 different CFS specialists at once, as I was trying to cover all the areas of my issues and they never seem to be interested in any of the others just their own interest with it. Many of them work soooo slowly too, it may take 3-4 visits before they finally decide to treat a symptom. At that rate I would of been seeking treatment for my symptoms for the next 300 years (so it helped having more then one of these specialists).
Im nowdays under only 2 CFS specialists (which Im trying to get back too) but thinking of also adding another . as thou he doesnt treat the symptoms I have, he thinks the other specialists in this state are backward (he's a bit ahead of those) so Im thinking maybe he could be good for paperwork support at times when Im battling something (he may understand the PACE trial was screwed up).
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Is the Western Australia ME/CFS society still inactive? Sometimes one can find better doctors for us throu our societies that's how I found my specialists.