I actually think quite a lot of reseach on CFS is going on in Australia as there have been quite a few CFS studies done from Newcastle University or hospital (eg a CFS study about CFS and nasal Staphylocci comes to mind straight away) and other places over here… leading studies…
Another I can think of is the Royal Adelaide Hospital, they were first responsible for finding out new affected area of the brain throu SPECT scans in Fibro patients (fibro and CFS often go hand in hand).
I also know my CFS specialist (he was connected to Flinders Medical Centre)… did a study over here on Rickettsia and CFS a while ago.
Currently there is a CFS study running at the Adelaide Royal hospital in which the head endocrinologist (Dr Burnet) is running along with other doctors, in conjuction with the Queen Elizabeth Hospital.
This study is struggling due to low funding (Dr Burnet told me this) and is doing the study on an aspect which hasnt been studied before… with compansions going on with MRI, SPECT and BP problems to see if severity can be shown throu those and if those the severity talliates (is that the word??) through the various tests.
I also volenteered in another study on CFS (this one on carnatine (sp?) levels and CFS) done by someone from the Adelaide University… several mths back. (that one was only very small …20 CFSers).
I like the studies done in Australia as in most of the studies done over here, the Canadian criteria for CFS is being used when choosing volunteers.
This I think is much more accurate than the criteria in which the CDC in america, ive heard is using in its latest study (hence why lastest statistics over there are very inflated)… or in England where many who just have fatigue… end up in CFS studies, many of those do just have depression.
Where as the Canadian defination when its used to pick CFS study participants… those studies are recongised them as being more accurate on a world wide bases.
If you are wanting to support a study any where in the world … a great organisation to contact would be the Alison Hunter Memorial Foundation Ã¢â‚¬â€ Australia
The Alison Hunter Memorial Foundation Limited (ACN 085 075 305) was established in 1998, and is a non-profit institution.
The Foundation works independently in a spirit of support and cooperation with all researchers, institutions and ME/CFS societies to advance scientific knowledge and medical care.
They’d know where money is really needed in research and probably could provide contacts.
That foundation funds many studies and has done wonderful things for CFSers (they also help educate public by public seminars and also put money into flying CFS experts places, to educate large groups of doctors on it). Alison Hunter was a sydney? 19 yr old, who had CFS for 10 yrs and who sadly died from it…
One area of CFS i’d like to see a study done on as Ive been wondering about for a couple of years now… is the rate of birth defects of CFS mothers compared to the normal population.
As far as i know no study has been done on this…but some CFS experts have noted that CFS mothers are more likely to bear children with major birth defects (eg missing organs). That would be a very cheap study as its just questaire stuff… but would need to be done by a recognised place. I know i’d like to know the risk rate if I had another child of the likihood of problems (birth defects) with it due to the CFS…
Far too little is known about our illness in so many different areas, even in those areas in which a study would be simple and inexpensive.