American Express is taking nominations for “projects” suggested by members and will fund one for up to $5M.
I’ll be the sponsoring member. You guys figure out how we’d use $5M in
research funding, and send me your paragraphs for assembly into a cohesive whole.
More details at AmericanExpress.com
Great Idea CFSfacts,
Let me know if there is anything else I can do to help.
Regards
Kingfan
Set up a CFS research group at the Queensland Brain Institute or Institute for Molecular Bioscience at the University of Queensland.
These institutes are doing fantastic world-class research into other brain diseases and research into neuroimmunology and there are many CFS patient organisations in Australia which would be able to provide samples and detailed family histories for genetic studies and neuroimmunology research.
Funding specifically put aside to establish a CFS research group would be a great way to encourage CFS research in Australia because at this stage very little CFS research is being done despite the significant CFS patient population in Australia.
I am presently out of the office. For help please contact:
Rafaela Delanuez rdelanuez@kglogistics.com
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  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.
In a message dated 6/29/2007 6:45:23 A.M. Pacific Daylight Time,
cfs-cpt4093@lists.careplace.com writes:
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…
Amen to that.
I was the primary breadwinner, and they could not tell us what pregnancy
would do to my health; the strain on my already battered body might have made me
permanently disabled. I made it clear to DH that unless he could support
the family without my income, we could not take the risk that I’d be bedridden
and the family would be homeless as a result. He never stepped up to prove
that he could earn enough to make my income unnecessary, though he certainly
complained enough about me “not giving him a baby”.
And if the child had had any sort of birth defect, there was no way that he
was going to be a decent caregiver for a handicapped child, so there again, it
would have meant him getting a better job to pay the bills so that I could
stay home and ferry the child between therapy sessions and doctor
appointments. Even a healthy child’s needs have to come first, and he couldn’t even put
my needs first for a couple weeks while I was relapsing, so you know he
wouldn’t enslave himself to a child who needed more than the usual amount of care.
(Last laugh: his post-divorce girlfriend had a daughter, and after the
novelty of people at church praising his lovely family wore off, he tried to get
the girl sent to live permanently with her grandparents. Oh, yeah, he’d have
been a wonderful father </sarcasm off>)
Karen M. Campbell
Sacramento, Calif.
Writer - Editor/Proofreader - Paralegal
Desktop Publisher - Researcher - Translator (German/French)
specialties: law, politics, women’s issues, sports, health, cats, needlework
www.KarenMCampbell.com
Book in Progress: “Help! My Walls are Full!” (alternatives to framing your
needlework)
See my needlework designs at www.KarenMCampbell.com/designs.html
www.CFSFacts.org – dispelling the myths and providing the facts
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Karen (i hope u dont mind me using your name), Im glad to hear that you didnt give in to that expartner of yours. Some guys really suck.
In a message dated 6/29/2007 9:42:58 P.M. Pacific Daylight Time,
cfs-cpt4093@lists.careplace.com writes:
Karen (i hope u dont mind me using your name), Im glad to hear that you
didnt give in to that expartner of yours. Some guys really suck.
Some guys are merely overgrown children. The key is being able to tell
which ones can cope with no longer being the center of their wife’s universe, and
which ones will step up and become more responsible when the kids arrive.
This one, when he finally did get a live-in child, every single thing I was
hearing through the grapevine was EXactly what I had predicted would be an
issue with him. The good news, since she was someone else’s child, he didn’t
have to spend his own money supporting her, because having to cut back on his
luxuries was something he was never going to do.
Plus, this makes me more attractive in the dating market – so many of my
friends with kids find themselves unwanted as soon as it comes out they have
kids at home. I have enough strikes against me without adding “single parent
who doesn’t receive a cent of child support”. (A judge could order it, but
he’d never pay it.)
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