"National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University"
About: National Centre for Neuroimmunology and Emerging Diseases National Centre for Neuroimmunology and Emerging Diseases Gold Coast 4222
Posted by The Impatient Patient (as ),
Many people have asked about my visit to the Clinic so here is a good place to share!
I donated blood to Griffith Uni's research into Chronic Fatigue Syndrome and Myalgic Encephalomyelitis before my visit, so they had this information already.
You do fill out a lengthy form before your appointment, submitted along with the referral from your GP. I waited around 4 months for an appointment as they only see patients on Fridays.
The visit begins with a physical examination with a doctor (sorry I forget her name), then a consultation with a specialist and the examining doctor. The specialist is an experience and knowledgeable doctor who is also a researcher. I already had a diagnosis from a General Physician and was hoping the specialist could answer my questions about all the research (not just theirs) and if it was applicable to me, however they wouldn't comment. Understandable but frustrating for me.
The specialist did confirm my diagnosis and did not suggest anything except to advise that I should "do only one third of what you think you can do" in order to have the best chance of recovery. It was interesting to hear the specialist explain about how it affects the blood/brain barrier and other details.
I also had to opportunity to meet a professor and hear about the research (and my blood test results used in their research) which was fascinating, but not part of the appointment.
There is really good research going on, however as we all know, no treatments available so it may not be worth a long trip. It is worth keeping up to date with their research (although I do find it disappointing that they use the old 1994 CDC Fukuda criteria instead of the up-to-date International Consensus Criteria for Myalgic Encephalomyelitis).