It sounds like you've been through way too much. I hope things are a little better at the moment. I'm in South Australia like you by the way. I never thought about ME/CFS studies. I didn't think they would have many here. How did you join these studies? was it through your GP or..? I guess I don't really assume a neurologist will be helpful to me other than ruling out MS. I don't want to sit there and get the patronizing little talk where everything gets attributed to anxiety but there aren't many ways around that with doctors in my experience. I still want to get the scans done though. I know there is something wrong with my brain.
We have some great ME/CFS studies here.. a group of doctors, specialists in ME/FM from various places in the state, got together years ago to do ME research and they still do.. they called themselves the Adelaide CFS Research group but I dont know if they still go by that name, the recent studies Ive seen published they've just published under their names. http://sacfs.asn.au/news/2011/03/03_01_publication_of_original_adelaide_cfs_mri_study.htm
I also been in other studies for ME in this state (Long-chain acylcarnitine deficiency (2011) University of SA http://onlinelibrary.wiley.com/doi/1...341.x/abstract ..
A few of the CFS/ME researchers in that research group (Ive no idea if the others practice med still or not so only know about the following ones) are:
- Dr Burnet .. he's an endocrinologist at the Royal Adelaide Hospital at the Endocrine and Metabolic Unit (he hasnt been helpful to me as far as ME goes except for me having the studies and getting the results. He did told my family to look after me, didnt suggest treatments thou).
- Dr Richard Kwiatek (I cant tell you much about him as I havent seen him myself thou Ive gone to a talk about FM by him). He's a Rheumatoligist (He was at the QEH and Nth Adelaide, I assume he's still there .. If you have FM as well, I think he'd be worth a visit).
- Dr Peter Del Fante (I know he was working as a doctor or specialist still somewhere.. i once went to one of his ME/CFS talks but I havent seen him as a doctor).
I didnt join throu my doctor at all but contacted the ME researchers in various places to see if I could join when they are recruiting people as I wanted tests but couldnt get the tests I wanted, so got them throu the studies.
If you scroll down at http://forums.phoenixrising.me/show...tralian+CFS+ME+History+and+Events&redirect=no you can see some of the Aussie studies.
If you never seen him Dr John Graham (CFS specialist) is worth a visit (i think he's semi retired? as he's working from home), he's real brainy (warning he'll wear you out as he likes to talk!!) and will think of tests your doctors havent and often diagnoses stuff others have missed (He picked up my MTHFR polymorphism from another tests results and I was able to get it confirmed so I was FINALLY able to find out why my child was born disabled.. this means I also have methylation issues as far as ME/CFS goes).
After trying many other things, he's started me on a new supplement program based on hair analyses results which showed deficiency .. its really helping me. (He's into all kinds of stuff as far as CFS goes eg rickettsia, nutrition, genetic stuff etc and is open minded).
He's practices from home at Clarendon and is quick to get in to see (he usually gets me in within 2 weeks.. Im not sure about his new patients). I think he mostly just sees CFS patients nowdays or old patients of his, (He used to be an internalist at Flinders Medical Centre). Let me know if you want his phone number or email to contact him to make an appointment (I dont know, you may need a doctors referal to him? but Im not sure so you'll need to ask him).
Dr John Graham is the only ME/CFS specialist Ive gone to as a patient and found really very useful (John Graham also will happily do any needed paperwork too, he cares about his patients).
There is also a ME/CFS specialist who's a GP, out Stirling/Bridgewater way but one cant get in with her (ive heard of someone travelling 3 hrs each way to see her).. she doesnt even take new patients onto her 1 year waiting list she's so booked out.
Let me know if you are out Adelaide Hills way.. eg Mt Barker, Naine. There was an old GP who was a ME/CFS specialist out there too which I'd have to look for details to give you if you wanted it. (He got CFS himself was semi retired and working from home). I thought he'd retired but I came across mention of him again the other day so think he must still be working.
(He didnt really do much for me except willingly filled out some paperwork I had to get filled out due to the ME/CFS .. I think one of this GP specialities may be counselling. He didnt really offer me any real treatment plan).
As far as POTS goes.. I havent been able to find ONE doctor or specialist in this state who is really interested in POTS, One mentions it and they just say they've never heard of it and unfortunately dont research it. Let me know if you ever find anyone to give you an offical diagnoses of it. (I once had a temp doctor who did know about it and agreed due to my heart monitoring results I had it.. but that info isnt in my medical notes and current doctor wont believe it exists)
ps I hope you didnt mind me giving you all the ME/CFS doctor info for our state... I thought I would in case you ever need to see someone different for other ideas etc (Im also curious what doctor diagnosed you and if you are seeing a CFS specialist)