Seeking diagnosis - Melbourne
I am in a severe flare at the moment (bedridden and housebound) and managing things mostly on my own. I’m at the point now where a diagnosis would be a welcome relief. I just need to know so I can adjust to this life and get the right supports.
I have seen a bunch of specialists for different symptoms over the years. I am very aware of the shortage of ME/CFS aware physicians, let alone those who are up-to-date on the latest criteria and evidence base.
I am in multiple ME/CFS Facebook groups however so is someone I work with and so I don’t feel entirely comfortable posting there for answers. I continue to search/monitor these groups for answers with no real success so far. I’m aware names can’t be shared here, but if you have had a positive experience of diagnosis in Vic (or even via interstate Telehealth) and have the spoons to share via a direct private message I would be so, so grateful. Thank you. Hope you are all managing okay today.
Best of luck @yawning - and while it's not appropriate to post names in the forum, there's absolutely nothing wrong with people sharing names by private message like you've asked.
I'm afraid I'm a lapsed Victorian (I've been in the ACT for over a quarter of a century) so am no good for doctors down there, but if you're not in it already, there may be value in looking in this Facebook group (the 'Good' is part of the name - I'm not in it so can't recommend it personally):
Good Australian Doctors for ME/CFS/FM/EDS/POTS/Hashimotos - https://www.facebook.com/groups/287952358017187/
Also, if you haven't already, there may also be value in getting in touch with Emerge's telehealth nurse ( https://www.emerge.org.au/telehealth-nurse-service ) - they may be able to help you get information together to help get a diagnosis.
Apologies if all of the above is old news. Best of luck, both with getting a diagnosis and your health more broadly.
@yawning Hope you get the answer you’re after. I understand your frustration.