Australian CFS/ME History and Events

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Hi People
I'm a FMS-CFS/ME person in Melbourne. Been on the mailing list for ages, but never contributed. I have a memory of University of Newcastle doing a lot of what was controversial research which established CFS/ME as an actual valid disorder. I will try and find it, but I think it had a title with Hunter Valley in it somewhere. I'm retired now, so have more time to do stuff.
Mike
 

taniaaust1

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Tony.. My brain hasnt been up to working on the wiki for a long while but I just added the info you gave about that research grant in. thanks for the info.
Hereward, Hi, we are interesting to hear of any you know which is missing here :)
 

TinyT

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Aussie ME/CFS research

Hi Tania,

I found some more links to Aussie ME/CFS research:

http://www.me-cfs.org.au/news/research/acylcarnitine-deficiency-in-cfs/

"Recent research from the University of South Australia: ... in light of carnitines critical role in mitochondrial energy production, it has been suggested that chronic fatigue syndrome may be associated with altered carnitine homeostasis. This study was conducted to comparatively examine full endogenous carnitine profiles in chronic fatigue syndrome patients and healthy controls."

http://sacfs.asn.au/news/2011/03/03_01_publication_of_original_adelaide_cfs_mri_study.htm

There is a MRI study from Adelaide about to be published in the medical journal 'NMR in Biomedicine' which detected brainstem dysfunction and altered homeostasis in people with CFS.

I'll add more as I find them
 

TinyT

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The earlier Bond uni study (n=10) showing decreases in neutrophil respiratory burst, NK cell activity and NK phenotypes.

Full text: http://epublications.bond.edu.au/cgi/viewcontent.cgi?article=1210&context=hsm_pubs&sei-redir=1#search="bond+study+++cfs+++nk+cells"
 

TinyT

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Wasn't sure if this study was already in the list:

Blood parameters indicative of oxidative stress are associated with symptom expression in chronic fatigue syndrome,
Authors: Richards, R.S.; Roberts, T.K.; McGregor, N.R.; Dunstan, R.H.; Butt, H.L. Department of Biological Sciences, University of Newcastle, Newcastle, Australia

http://www.ingentaconnect.com/content/maney/rer/2000/00000005/00000001/art00009

I'll try and add them into the chapter but not really sure how to...
 

taniaaust1

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you've been busy TinyT :) .. I'll check them out soon. ..........

I just found one which is in a journal and can see our Aussie researchers are in it (Donald Lewis ... David Stapleton, Henry Butt and Paul Gooley are at Melbourne University), but the journal I see it published in dont mention Aust. (just the researchers and Belgium where Meirleir is). http://iv.iiarjournals.org/content/23/4/621.abstract

I assume that is the same study these worked on which got aussie funded http://docs.google.com/viewer?a=v&q...NGyRVK&sig=AHIEtbSoSAuyM8RB2CUWXFEY--j_ILxIBw (or a follow up one.. which then involved more including then Belgiums Meirlier. By the study and the number of patients.. its the same study or the same patient group must of been used).

"Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
Sheedy JR, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, Stapleton DI, Butt HL, DE Meirleir KL.

Bio21 Institute of Biotechnology and Molecular Science, Department of Biochemistry and Molecular Biology, Victoria, Australia.

Abstract
Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications"

I just found that on other CFS/ME site but with no link.. so i dont know where they got it from. "Bio21 Institute of Biotechnology and Molecular Science, Department of Biochemistry and Molecular Biology" is that part of University of Melbourne? as the funding for what seems to be same study went to University of Melbourne.
 

taniaaust1

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Hi Tania,

I found some more links to Aussie ME/CFS research:

http://www.me-cfs.org.au/news/research/acylcarnitine-deficiency-in-cfs/

"Recent research from the University of South Australia: ... in light of carnitines critical role in mitochondrial energy production, it has been suggested that chronic fatigue syndrome may be associated with altered carnitine homeostasis. This study was conducted to comparatively examine full endogenous carnitine profiles in chronic fatigue syndrome patients and healthy controls."
Wow.. I was one of the 44 CFS/ME people who participated in that study but I'd never knew that it had been published and never knew what my results meant (I got a copy of all my levels of the different Carnitines (51 different tests) but it didnt say on that what was the normal ranges.

Now I know the results for the study :) and what my blood probably showed. So a huge thank you.
Results?

Chronic fatigue syndrome patients exhibited significantly altered concentrations of C8:1, C12DC, C14, C16:1, C18, C18:1, C18:2 and C18:1-OH acylcarnitines; of particular note, oleyl-L-carnitine (C18:1) and linoleyl-L-carnitine (C18:2) were, on average, 30-40% lower in patients than controls (p<0.0001). Significant correlations between acylcarnitine concentrations and clinical symptomology were also demonstrated.

Conclusions

It is proposed that this disturbance in carnitine homeostasis is a result of a reduction in carnitine palmitoyltransferase-I (CPT-I) activity, possibly due to the accumulation of omega-6 fatty acids previously observed in this patient population. It is hypothesised that the administration of omega-3 fatty acids in combination with L-carnitine would increase CPT-I activity and improve chronic fatigue syndrome symptomology
got to check out the MRI study link you put up next ..as Ive been in autonomic studies too which involved MRIs and Ive never seen those published either.
 

taniaaust1

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throwing gear here to find better links for later
"Rey Casse (Adelaide SA) used SPECTscans to study regional cerebral blood flow in CFS. He recommended that a triple headed camera be used for accuracy and reliability. 13 CFS patients' scans were compared with 11 people suffering from other conditions with normal scans. Visually, deficit in regional cerebral blood flow was found in the temporal areas in 7 patients, and equivocal in 3. Statistical Parametric Mapping was applied to show location and amplitude of significant focal deficits. Most deficits were found in the brainstem, temporal lobes, frontal lobe and anterior cingulate gyrus.
Research findings presented by Rey Casse (Adelaide, SA) to The Sydney ME / CFS Clinical and Scientific Conference, December 2001
"

Brain Link to Chronic Fatigue Syndrome
ImmuneSupport.com
07-15-2002
An area of the brain that controls the stomach receives substantially less blood in some people with chronic fatigue syndrome, a study shows. The finding adds more weight to the argument that the controversial illness is biological, not psychological.
Brain scans of 40 chronic fatigue patients were carried out by Adelaide scientists and compared against the scans of healthy people. The director of nuclear medicine at Queen Elizabeth Hospital, Dr Steven Unger, who headed the study along with neurologist Dr Rey Casse, said: "There was a very strong change in cerebral blood flow in patients."
...........

"In this joint ongoing study with Dr Richard Burnet
(RAH Endocrinology Unit) and Dr Peter Delfante
(general practice), we have performed cerebral SPECT
studies in over 70 patients with CFS, and are currently
enrolling normal volunteers for the largest age and sexmatched
comparative study yet to be performed. Initial
results using Statistical Parametric Mapping (SPM) have
suggested significant deficits in rCBF in several brain
regions in patients with CFS, particularly the insular
cortex and thalamus"
and
"Barnden L, Casse R, Kwiatek R, Kitchener
M, DelFante P, Burnet R, Behin-Ain S,
Unger S. Brain SPECT of Chronic
Fatigue Syndrome (CFS): SPM Analysis
of Two Age Groups. 2002 Annual
Scientific Meeting of the Australian and
New Zealand Society of Nuclear
Medicine, Cairns, May 2002."
and
"Casse R, Chew CG, Barnden L, DelFante P,
Burnet R, Kwiatek R, Chew J, Behin-Ain S,
Unger S. Brain SPECT of Chronic
Fatigue Syndrome (CFS): a Blinded
Visual Analysis. 2002 Annual Scientific
Meeting of the Australian and New
Zealand Society of Nuclear Medicine,
Cairns, May 2002."
above quote from http://www.hospitalresearch.com.au/wp-content/uploads/2010/10/Research-Report-2002.pdf (was these studies ever published??)
 

heapsreal

iherb 10% discount code OPA989,
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wow tania, now we need to put it together some how and then flood the right people with this info. I might try and come up with my only little thing using some of your info and run it past u guys and maybe others can do the same, maybe different version can be more effective then just a blanket version of the same info being sent out might be more effective. I thinkit might take me awhile though.

Alex i think has experience at doing this advocacy work, we need to bleed some of his experience.

cheers!!!
 

taniaaust1

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wow tania, now we need to put it together some how and then flood the right people with this info. I might try and come up with my only little thing using some of your info and run it past u guys and maybe others can do the same, maybe different version can be more effective then just a blanket version of the same info being sent out might be more effective. I thinkit might take me awhile though.

Alex i think has experience at doing this advocacy work, we need to bleed some of his experience.

cheers!!!
Melonie really helped some too getting this wiki page together along with others too wee bit. I'd love to see some of this info used to be sent to people who need to know it to help us all.
..............

other Aussie studies which as yet I havent had time/energy to find good links on
Richards Ross Stuart, Roberts Timothy Kilgour, Mathers D, Dunstan Richard Hugh, McGregor N R, Butt Henry Lawrence, Erythrocyte morphology in rheumatoid arthritis and chronic fatigue syndrome. A preliminary study, JOURNAL OF CHRONIC FATIGUE SYNDROME, 6, NO. 1 23-35 (2000) [C1]

Richards Ross Stuart, Roberts Timothy Kilgour, Mathers D, Dunstan Richard Hugh, McGregor N R, Butt Henry Lawrence, Investigation of erythrocyte oxidative damage in rheumatoid arthritis in chronic fatigue syndrome, JOURNAL OF CHRONIC FATIGUE SYNDROME, 6, NO. 1 37-46 (2000) [C1]

Richards Ross Stuart, Roberts Timothy Kilgour, Dunstan Richard Hugh, McGregor N R, Butt Henry Lawrence, Free radicals in chronic fatigue syndrome: cause or effect?, Redox Report, 5 146-147 (2000) [C2]

Dunstan Richard Hugh, McGregor N R, Roberts Timothy Kilgour, Butt Henry Lawrence, Taylor Warren Glendon, Carter Anne Cynthia, The development of laboratory-based tests in chronic pain and fatigue: 2. Essential fatty acids and cholesterol, JOURNAL OF CHRONIC FATIGUE SYNDROME, 7, NO. 2 59-62 (2000) [C1]

Dunstan Richard Hugh, McGregor N R, Roberts Timothy Kilgour, Butt Henry Lawrence, Niblett Suzanne Helen, Rothkirch Tony Brian, The development of laboratory-based tests inchronic pain fatigue. 1. Muscle catabolism and coagulase negative staphylococci which produce membrane damaging toxins, JOURNAL OF CHRONIC FATIGUE SYNDROME, 7, NO. 2 53-57 (2000) [C1]

Dunstan Richard Hugh, McGregor N R, Butt Henry Lawrence, Roberts Timothy Kilgour, Biochemical and microbiological anomalies in chronic fatigue syndrome: the development of laboratory based tests and the possible role of toxic chemicals, Journal of Nutritional & Environmental Medicine, 9 97-108 (1999) [C1]

Dunstan Richard Hugh, McGregor N R, Watkins J A, Donohoe M, Roberts Timothy Kilgour, Butt Henry Lawrence, Murdoch Raymond Neville, Tayler Russell John, Changes in plasma lipid homeostasis observed in chromic fatigue syndrome patients, Journal of Nutritional & Environmental Medicine, 9 267-279 (1999) [C1]

Roberts Timothy Kilgour, McGregor N R, Dunstan Richard Hugh, Donohoe M, Murdoch Raymond Neville, Hope D, Zhang S, Butt H L, Watkins J A, Taylor Warren Glendon, Immunological and haematological parameters in patients with chronic fatigue syndrome, Journal of Chronic Fatigue Syndrome, 4 51-65 (1998) [C1]

conference publications

Robinson Gl, Sparkes Dl, Roberts Timothy Kilgour, McGregor Nr, Conway Rnf, Biochemical anomalies in people with chronic fatigue syndrome who have visual problems: implications for immune system dysfunction and dietary intervention, Proceedings of International Clinical and Scientific Meeting, Sydney, NSW (2002) [E3]

McGregor Ne, De Becker P, Clifton-Bligh P, Stein E, Butt Henry Lawrence, De Meirleir K, Hoskin L, Dunstan Richard Hugh, Fulcher G, King Katrina Eileen, Niblett Suzanne Helen, Roberts Timothy Kilgour, Dunsmore J, Evidence-based model of the pathogenic mechanism associated with symptom expression in ME/CFS, Proceedings of International Clinical and Scientific Meeting, Sydney, NSW (2002) [E3]

Emms Tania Margaret, Roberts Timothy Kilgour, Butt Henry Lawrence, Buttfield I, McGregor Nr, Dunstan Richard Hugh, Food intolerance exists as a co-morbidity in chronic fatigue syndrome, Proceedings of International Clinical and Scientific Meeting, Sydney, NSW (2002) [E3]

Emms Tania Margaret, Thrift M, Buttfield I, Roberts Timothy Kilgour, Butt Henry Lawrence, Dunstan Richard Hugh, Supplementation with l-serine shows potential for symptom management in chronic fatigue syndrome (ME/CFS), Proceedings of International Clinical and Scientific Meeting, Sydney, NSW (2002) [E3]
 

taniaaust1

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note to myself or anyone who wishes to follow it up.

Info on Australia outbreaks Im finding hard to find and get details on. If he's still around and contactable.. Im thinking one called C.S. Goodwin at the time from Royal Perth Hospital (dept of Microbiology) who published article in Lancet 30 years ago (in 1981) writing on "Was it benign myalgic encephalomyelitis?", researching various outbreaks worldwide, would probably know about the early Aussie outbreaks http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(81)90134-3/fulltext# if he's still alive and contactable to ask.
Im realising a lot of the old ME experts or people with big interests in that would of passed or be close to passing away by now taking knowledge and details of ME history with them. **sad**
...............
(on a little further research.. this guy may be still around as he was still getting his articles published online in 2008 on helicobactor pylori thou the article is from 1994 (seems to have dropped his interest in ME?? or did he?, he came well known in that other field..He ended up working with another at Royal Perth Hospital, the rediscoverer of Helicobactor pylori and discoverer that it causes stomach ulcers)..

Crap looking back at history one wishes some of these outstanding scienctists stayed studying their interest in ME or managed to get the other famous scienctists involved)..

they havent taken away his correspondence details "Correspondence: Professor C. S. Goodwin, Department of Medical Microbiology, Faculty of Medicine, United Arab Emirates, PO Box 17666, Al Ain, United Arab Emirates." Where on earth is that?? He moved overseas??
.........