aussie cfs stusdy bond uni results

[heapsreal]

Anyone get there bond uni results?

My NK bright cells were low again which is the marker they are finding low in the cfs patients but what im finding interesting is my NK activity is high when i have been on the antiviral famvir and that bit higher when on famvir and cycloferon,when on nothing my NK activity was very low, this seems to correlate with my lymphocyte sub set tests i had around the same time. My nk bright cells always seem very crappy though.

I hope bond uni follow up this study with something else, maybe some sort of treatment trial or a retroviral test as its a common finding of poor nk function not only in cfs but those who test positive to xmrv/mlv.

I hope they dont leave cfs research in the lurch, especially now the govt are taking money away from medical research. These sorts of studies prove that there is some sort of disease going on other then psychological, we have an immune disorder going on and we need this sort of research to keep going on so we can get better treatment and get our lives back. The risks of not treating this properly are increased risks of cancers, lymphomas, chronic infections etc, the general public need to know that its not something where people are just tired, its a serious illness with serious consequences and there is medication out there now that could possibly help us but we can only get it prescribed off label and its not covered by PBS (pharmacuetical benefits scheme)so costs us a fortune.

Theres been some good aussie research done in the past by universities in adelaide and newcastle but nothing has followed on from them. I even read one rescently from the early 1990s that showed depression in cfs was no higher then the general population but it seems that the average doc thinks its another form of depression. We really need to get this thing sorted, its just not a high profile illness, money floods into breast cancer and other illness that are popular and they do need research dollars but its not evenly spread, maybe because cfs isnt considered real. Its just not dam fair!!!

cheers!!!

 

[insearchof]

hi Heaps

ThNks for this post and up date. Sorry, I cannot recall, but have they published the research findings yet?

interesting correlation btw NKC activity and use of antivirals, but makes perfect sense to me. Antivirals would be addressing viral load and giving the immune system the opportunity to crank up NKC that might otherwise have been overwhelmed and gave up the fight. Higher NKC levels is what you would expect to see I would have thought in a better functioning immune system....suggesting that they are fighting off viruses etc in the body.

As for them doing retroviral research.....that is unlikely, given no one in Australia ie orgs and patients, seem keen to actively raise awareness on XMRV,the need for research and to push the matter. it seems that XMRV is a dirty word in Australia, and the only people who want what your asking for are those who are too emotionally invested or overly focused on the subject and its outcome. After all, the science in this area is not credible and a case in support of your request, could not possibly be entertained. To do so, would only make us look foolish and we can't have that. That is far more important than the spread of a retrovirus amongst the community, or assisting the health of a portion of the ME CFS community who might already be XMRV MLV positive and need of treatment and care. And who wants the stigma right? Can you begin to imagine how horrific it would be living with an ilness that results in stigma and discrimination...even being denied adequate health care? And of course don't forget, engaging in such premature activity might also cut off all those funding opportunities and research grants in the pipeline. Then where would we be? *wink*

ISO

 

[taniaaust1]

Im finding with the studies Ive been in, it's taking approx 4 years before they are published. Science moves slow.
..........

Actually looking about the place its interesting to see just how much CFS is researched in Australia (psychological CFS studies are very rare here).. seems quite a few places have their focus on it thou its not government funded.

(just looked up the bond uni and it seems one of their main areas of research http://www.bond.edu.au/research/research-at-bond/current-research/index.htm .. at bottom of it.)

We really, considering the government isnt really putting money into CFS/ME (does anyone know who much the goverment puts into that here? anything?? what studies is government funding? All the studies Ive looked at have been funded elsewhere), I personally are happy about the amount of good CFS/ME studies going on here compared to what's happening elsewhere.

It's quite possible that one day they may find the cause of CFS/ME here (if its not solely caused by XMRV).
.........

I just found the following on the bond site "The Faculty is currently administering research projects for various levels of government and other providers."
umm could they be researching CFS/ME for our government???

..........

http://www.bond.edu.au/faculties-co...ine/research/research-opportunities/index.htm "Implementation of a diagnostic tool for CFS/ME in clinical practice" .. seems that is their main research focus (so includes all that immune stuff too).
...........

"The Public Health and Neuroimmunology Unit (PHANU) is the only facility in Australia specifically established to examine how an immune response impacts on neuro-degenerative diseases related to ageing/indigenous health and fatigue-related conditions such as Chronic Fatigue Syndrome.

PHANU, a collaborative initiative between the Gold Coast Population Health Unit and Bonds Faculty of Health Sciences and Medicine, is one of only a few in the world focused on this niche area of research. "
http://www.bond.edu.au/faculties-co...ion-health-and-neuroimmunology-unit/index.htm

 

[Tony]

From memory the Qld state govt put in about $460,000 for this study by Bond uni and The Mason Fdn put in maybe 100 grand or so.

 

[Megan]

Tania and others,

The research dollars provided by for CFS by the Australian government can be found on the National Health and Medical Research Council (NHMRC) website. http://www.nhmrc.gov.au/grants/dataset/issues/chronic.php

There is hardly anything going for CFS. If you drill down into the spreadsheet you can see who is receiving money for what. Seems to me the only money going for CFS is about $100,000 p.a. fellowship to Prof. Lloyd. There is someone else called Janet Taylor who seems to be doing research into fatigue in general but is not specific to CFS. Does know more about her or what she is doing?

 

[insearchof]

Funding towards CFS research in Australia, as reported by the Australian ME/CFS Society, was said to be $117,000 per annum over the last 25 years or $1.17 per patient, (contrasted to $400 per patient for HIV/AIDS).

Dr Janet Taylor appears to be a medical neuro research scientist with the Prince of Wales Research Institute, which is also part of the University of New South Wales at Randwick.

She is also listed as a *Senior Research Fellow, NHMRC, Conjoint Senior Lecturer, UNSW and Honorary Senior Lecturer, University of Sydney NSW.

Research Fellows of the NHMRC - from the NHMRC website

''The NHMRC Research Fellowships Scheme aims to provide opportunities for outstanding biomedical and health researchers with proven track records to undertake research that is of major importance in its field, and of significant benefit to Australian health and medical research''

According to the NHMRC in Australia:

''Research Fellowships, like all Fellowships offered by NHMRC, are prestigious, highly competitive five year awards. They are highly sought after, and awarded through rigorous peer review.

As at October 2009, there are four levels of seniority within the NHMRC Research Fellowship scheme. These are (from highest to lowest):

SPRF Senior Principal Research Fellow
PRF Prinicipal Research Fellow
SRFB Senior Research Fellow B
SRFA Senior Research Fellow

Dr Taylor has also held post doctoral fellowship positions in Canada and in the UK.

She seems to have an interest in neuro cognitive issues, motor and musculo skeletal issues, proprioceptors (kind of nerve associated with balance)- balance, movement and sensation issues including fatigue in these areas with exercise. In short, neural control of human movements, especially during muscle fatigue.

In 2006 Dr Taylor received a grant from the Mason Foundation for CFS research. The project was called 'Neuromuscular performance in post-infective fatigue syndrome' (PFVS?)

Working with Prof Simon Gandevia they were awarded a grant in 2009 to study Novel Central Mechanisms in Proprioception. Grant no. 568700. Grant funding of $456,500

Gandevia, Taylor and Dr Butler were also awarded another grant in 2009 to study neural aspects of human muscle fatigue. Grant no 568702 for about $320,000.

I was unable to find any further information on projects involving Dr Taylor and CFS post 2009, but any subsequent grants might therefore have been on going ones associated with the above studies?

 

[taniaaust1]

Thanks Megan, Tony and insearchof for answering the questions i had on this .

 

[heapsreal]

Tania and others,

The research dollars provided by for CFS by the Australian government can be found on the National Health and Medical Research Council (NHMRC) website. http://www.nhmrc.gov.au/grants/dataset/issues/chronic.php

There is hardly anything going for CFS. If you drill down into the spreadsheet you can see who is receiving money for what. Seems to me the only money going for CFS is about $100,000 p.a. fellowship to Prof. Lloyd. There is someone else called Janet Taylor who seems to be doing research into fatigue in general but is not specific to CFS. Does know more about her or what she is doing?

Hi Megan, with cfs funding the sums dont seem to add up when u take into account the money bond uni have for cfs, does this money come out of a different bucket? not the NHMRC, i also think that some money for bond uni was privately donated and the rest by the qld govt, so i suppose that doesnt come from the NHMRC budget.
Even including all that theres not much spent on cfs. I would like to know why cfs research didnt continue at newcastle university and also adelaide where some good research did come from, its all political i guess.

cheers!!!

 

[taniaaust1]

heapsreal... i think there are currently some studies going on in Adelaide still or finished not too long ago.. A dr who's last name starts with K (he's from one of the main SA hospitals i think.. he previously did CFS/ME studies with Dr Burnett) i think was doing one. I guess we will see more published from Adelaide sometime in the future.

 

[BlueCoffeeMug]

Just a quick response...

I believe the paper below is the intermittent report for the Bond Uni ME/CFS Research. The study is still ongoing and the participants are scheduled to give the last blood in Nov and Dec. So, the final paper should be published sometime next year.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf

 

[heapsreal]

Just a quick response...

I believe the paper below is the intermittent report for the Bond Uni ME/CFS Research. The study is still ongoing and the participants are scheduled to give the last blood in Nov and Dec. So, the final paper should be published sometime next year.
http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf

Thats true i have one more test in november.
I have heard that dr peterson is hooking up with bond uni and is going to use this test as a biomarker for his ongoing, or so the rumor go's.

cheers!!!

 

[taniaaust1]

heapsreal... i think there are currently some studies going on in Adelaide still or finished not too long ago.. A dr who's last name starts with K (he's from one of the main SA hospitals i think.. he previously did CFS/ME studies with Dr Burnett) i think was doing one. I guess we will see more published from Adelaide sometime in the future.

just wanted to update what i said previously said back in May with more info. I posted a thread on this the other day and this study is possibly being held up due to lack of healthy volunteers for control group. http://forums.phoenixrising.me/show...-study-needs-non-CFS-people-for-control-group.

I dont know how long that study runs (I think it was a phase 2 study (its follow on studies).. the Adelaide ME/CFS research group have been looking into this stuff for years and previously published) but its been going on for a while, so they may even have the ME/CFS group scans and that already done? May be a case of just sorting out the control group.

So maybe we will not just see bond study completed next year but possibly this one too from Adelaide.
....

Are people sure no ME/CFs studies are currently being done at Newcastle?

 

[taniaaust1]

I just started looking at researcher reports and appears that Newcastle is still researching ME/CFS or may be about to publish. http://www.newcastle.edu.au/research/expertise/136575.html

Year 2010 a ME/CFS study started which has a 1 year duration time so should finished this year (Mason funded.. costing $99,910) .... "The Role of Lewis Phenotype and ABH Secretor Status in Relation to Nasal Carriage of Staphylococcal Species in Patients with Chronic Fatigue Syndrome:A Pilot Study"

Has anyone seen this study published yet?. (i saw a staph in nose study from them I think several years ago, before this study so this one must of lead on from that one)

For those who are unaware of all this.. a previous study by them found that those with ME/CFS have staph in their noses (which is common.. 1 in 4 people have staph in noses) but in the ME/CFS group, the staph we have is a TOXIN producing kind so can affects us. (I ended up having the staph in my nose treated due to reading about their first study).

Anyway.. I'd love to hear more about this study and if it has been published yet by Newcastle
.....

The Mason Foundation has funded so many of the Australian ME/CFS studies over the years, if it wasnt for them I'd hate to know how the ME/CFS Aussie research situation would be, we would not have half the research happening that we've had.
They also are currently funding the ME/CFS brain scan studies going on here in Adelaide currently. People should think about donating to the Mason Foundation.

(The Alison Hunter Memorial Foundation is still about too as far as I know and still helping us as well). Us aussies should think about donating to help research in our own country as it would be a great loss if our researchers here couldnt get money and had to stop doing studies due to that and we lost them to other fields. They depend on private donations and funding happening.

 

[merylg]

I just started looking at researcher reports and appears that Newcastle is still researching ME/CFS or may be about to publish. http://www.newcastle.edu.au/research/expertise/136575.html

Year 2010 a ME/CFS study started which has a 1 year duration time so should finished this year (Mason funded.. costing $99,910) .... "The Role of Lewis Phenotype and ABH Secretor Status in Relation to Nasal Carriage of Staphylococcal Species in Patients with Chronic Fatigue Syndrome:A Pilot Study"

Has anyone seen this study published yet?. (i saw a staph in nose study from them I think several years ago, before this study so this one must of lead on from that one)

For those who are unaware of all this.. a previous study by them found that those with ME/CFS have staph in their noses (which is common.. 1 in 4 people have staph in noses) but in the ME/CFS group, the staph we have is a TOXIN producing kind so can affects us. (I ended up having the staph in my nose treated due to reading about their first study).

Anyway.. I'd love to hear more about this study and if it has been published yet by Newcastle
.....

Hi tania,

I am also interested in the results of this Newcastle Uni study re Nasal Staph. I have had similar problems with Nasal Staph to the point of having to see an Ear Nose & Throat specialist. Chlorsig (Choramphenicol) oitment would not help. Nor would having silicone dressings stitched over the septal ulcers!!! Only Bactroban (Mupirocin) ointment has helped.

My guess is I am a non-secretor of ABH Blood Group Specific Antigens (which are protective in lots of ways for secretors...including protective of the nasal lining, stomach/gut & lungs against bacteria)

http://www.right4eu.us/Lewisgroup.html

meryl

 

[taniaaust1]

Hi tania,

I am also interested in the results of this Newcastle Uni study re Nasal Staph. I have had similar problems with Nasal Staph to the point of having to see an Ear Nose & Throat specialist. Chlorsig (Choramphenicol) oitment would not help. Nor would having silicone dressings stitched over the septal ulcers!!! Only Bactroban (Mupirocin) ointment has helped.

My guess is I am a non-secretor of ABH Blood Group Specific Antigens (which are protective in lots of ways for secretors...including protective of the nasal lining, stomach/gut & lungs against bacteria)

http://www.right4eu.us/Lewisgroup.html

meryl

Hi there. Was your staph tested to see what antibiotics will work on it. Mine was tested in that way so when I got the report come back saying i had staph, the report also had a list of antibiotics on it and said which ones that staph was resistant too. (mine was resistant to probably 75% of antibiotics listed and there was only 2 or 3 antibiotics which could be used on it).

Even with the correct antibiotic for the individuals staph I was told it can be very hard to get rid of, hence when I then took the antibiotic course for it (I choose an antibiotic which also got rid of my strep at the same time), I also took high doses of olive leaf extract at the same time. To my doctors surprise.. that did get rid of it first go.

 

[eric_s]

Hi

Until Dec 15, there's a very easy way how we can win additional 10'000$ for Dr. Peterson's cytokine studies at Bond Uni.

There's a contest going on, where you can cast a vote for NIDA (Neuro-immune Disease Alliance), a charity that is funding that research. The prize is 5'000$ and it would be matched. You need Facebook to participate.

Details can be found on this thread, in posts #1 and #6.

Thanks