Hello
@heapsreal.....I've suffered with this for way over 35 years.
One of the reasons this is so hard to deal with is the many, many specialists we have to see, and no one to put the puzzle together (a doctor that knows the human body). I can remember thinking about that all those years ago, and my internist actually took an afternoon off work and went to the medical library looking for answers. No computers then, but I'll give him an A+ for trying. My neurologist attended medical conferences especially dealing with CFS/FM (as it was called then). So some doctors aren't ignorant, just as confused as we are.
I gather that things aren't much better in Australia. There are simply no "right" answers at this time. Perhaps the Long Haulers will move some much needed money into research. I'm a member of another organization for some neurological illnesses I have. I can tell you that one of our best research teams is out of Australia, and that's been a huge help. There are so many people suffering from so many causes. It's very frustrating.
How do you perceive the organizations like ours to be in Australia?
Are you on any drugs for your pituitary tumor. I had one in the beginning and was on bromocriptine for many, many years. It controlled it nicely. There may be newer ones available today. Yours, Lenora.