Discussion in 'XMRV Testing, Treatment and Transmission' started by dana, Jun 27, 2010.
I see. I hope something comes of it. Do you know if it is open to the public?
I understand it is a meeting of experts and will obviuosly be looking at XMRV. I think it is by invitation only.
Thank you very much
If it's not open to the public we can ask our CFS doctors to attend, they would probably be allowed to go and it would be good for them to make connections with American experts.
I have my first appointment with Dr Deed on Monday. He was suggested by Sonya from Bond, so I'm sure he will be going. It would be great to see some positive XMRV tests from overseas before December so they all take it seriously.
The WPI recently told me that they have no plans at this stage to do anything in Australia. I am also very keen to get tested, but it seems impossible at this point in time ....
I know the bond university on the gold coast has close contacts with nancy klimas who also has contacts with WPI, so fingers crossed something could still happen. Theres also suppose to be a meeting between klimas and bond uni group and some doctors in december, so something will be happening in australia. Might also have something to do with bond uni finding poor natural killer cell function in cfs pts, this might be apart of what mikovits is talking about when she mentions how the immune system reacts to xmrv etc.
Anyway i hope us that are involved in the bond uni cfs study do get tested and have a chance at treatment. Its all positive at the moment.
International Science Symposium for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/ CFS)
"This Symposium will explore recent advances in scientific disciplines to gain understanding of the pathomechanisms of this condition."
For anyone who doesn't receive Emerge magazine, the quarterly journal of ME/CFS Aust (Victoria/ACT/NSW) the speakers (subject to change) are:
Dr A. Chaudhuri, neurologist UK, Prof De Meirleir, Dr Jonathon Kerr, UK, Dr Daniel Peterson USA,
Dr Richard Kwiatek, rheumatologist, NSW, Prof Barrie Marmion, Q fever Sth Aust,
Dr Mario Delgardo (vasoactive neuro peptides) Spain
Dr A Boullerne, MRI techniques and CNS lesions, Chicago
Dr D Feinstein, CNS pathology, USA
Dr H Perry, Uni of Southampton, encephalitis pathology
Dr D O'Donovan, Neuropathologist, UK
Prof W Tate, Biochemistry professor, NZ
Prof P Blumbergs, neuropathologist, Sth Aust
Dr Olga Sukocheva, Q fever researcher, Sth Aust
Sounds like a good line-up of speakers and not a psychiatrist among them!
I do get EMERGE magazine but as I have been away for three months I can't access my copy at present. Is this a medical professional conference only and if not, does the ad say what the cost is? Thanks Tony!
Anyone know what research Prof P Blumbergs is presenting?
I have been to see Prof Andrew Lloyd and for me it was very beneficial.
I don't think the good hat / bad hat label should be applied to him.
Sometimes there are subtleties that cannot be summarised easily.
And so, it depends on how you approach him.
I think, by necessity he has walked on both sides of the street. As Cort
pointed out he has done a lot of good work. He seems to think that it is
a real physical illness but at the same time GET/CBT works. And I personally
suspect there may be something to GET, that it does help, but not for
the reasons they think.
From 2006 : http://www.unsw.edu.au/news/pad/articles/2006/mar/Hit_and_runMNE.html
Yes he has worked with "Simon" but with XMRV/MLV panning out
he may turn around and accept it and be a good ally here in Aus.
If any Australian that I know, needs to see PAL, contact me privately for advice.
I take your point that we should not hastily apply the good/bad hat to AL. Though I am not familiar with all his work I am aware that the Dubbo studies have been important contributions to this field.
But what I, and I think some other patients here, have found frustrating is AL's extreme negativity about the XMRV findings. His latest interview on radio PM, discussed on another thread, show that he is still very negative about this. http://www.forums.aboutmecfs.org/sh...erview-on-XMRV-CFS-with-Dr-Lloyd-and-Dr-Lewis. If he is willing to change his mind with the evidence then great, he could be an asset. But if he wants to drag his feet for as long as he can, for whatever reason, then this will only help to delay research and treatment in our country, with all our lives held in limbo longer than necessary.
I have read his Dubbo papers in detail as well as the above link you provide. One of the most startling pieces of illogic in all these is the conclusion that it is not EBV viral load that causes CFS therefore it must be a 'hit and run' brain injury. No evidence for this hypothesis is in any of the papers (unless he has it in his bottom drawer somewhere?). This is very similar to the illogic that 'we can't find a physical cause, therefore it must be psychological'. His negative findings could have thrown up a huge number of possibilities aside from brain injury. What about possible 'hit and run' damage to the immune system, the heart, liver or any number of other organs, not to mention the possibility of interactions with othe known or unknown viruses?
OK, be sceptical about the XMRV findings as this is what science is about. Why not apply the same level of scepticism to the psychological or brain injury ideas? Double standards abound in the area of CFS - there are many threads on this forum where people have discussed in detail how easily doctors/scientists simply accept the psychological interpretation with far lower requirements of proof than physical causes.
As far as CBT and GET are concerned, my understanding is that what annoys most sufferers about this is not whether they can help or not, but that they are used by implication to suggest that the CFS is psychological in its fundamental nature. As opposed helping patients cope with an serious organic illness in the same way they would with cancer or any other serious illness. I also understand that the evidence on these treatments for CFS is mixed. See the latest issue of 'Emerge Magazine' on how CBT has been harmful to some patients. Personally, I think CBT can be helpful to many of us as a mangement tool so long as it is not misused, but it doesnt fix us. I dont think GET should be classed with CBT as it is a very different thing. Personally I have had no benefit from GET and I know many who have been made worse by it and also others who have benefited from it (although they're not better either).
I've been in contact with Professor Tim Roberts at Uni of Newcastle. In his email to me he says: "In my view, our research has shown that CFS, Rheumatoid Arthritis,Fibromyalgia, TMJ syndrome, Dyslexia and Autism are the downstream results of ongoing low-level infection (most likely with bacteria that can infect and live inside our cells) and are a result of the body mounting a continuing immune response to try to get rid of the invader or invaders and eventually the body runs out of ammunition (amino acids that are needed to build defensive proteins). ". They've done a lot of research, at least since the 90s in this field, so I'll be interested in their thoughts about this.
I agree completely. I was quite disappointed to see his article written with Simon Wessley.
Just to be fair, I may have led people astray. That article was from 2006 and not a counter to XMRV.
I was using it to show he is on record for supporting the physiological cause to ME in the past.
Remember, Dr Lewis rejected XMRV cause on national radio just the other week as well.
But I respect that his intentions are good. I think, or hope that PAL is the same.
I can't see any signs of Dr Llyod walking on both sides of the streets. In the past I have had dealings with him through correspondence.
The Dubbo study is not particularly useful in that he uses it to illustrate his idea that it is a "hit and run" virus. Talking about a brain injury that influences "perceptions of fatigue" is highly damaging to patients.
GET damaged me as it does many other people with ME. It may be useful to people who are recovered from something, in remission or deconditioned. Dr Klimas presented a paper at the Invest in ME conference which showed how exercise caused an immune reaction in patients.
Dr Llloyd acted for a company when a PWCFS sued them for a needle stick injury (see Osler's Web). He acted against the patient as an expert witness with testimony that it was not a communicable virus.
Has anyone got the lowdown on what happened at the Dec 2-4th Bond University conference in Qld? I haven't seen any reports to date!
Hi, I haven't read the whole thread, so I apologize if I am repeating something already said. Dr. Lewis in Melbourne has had lots of patients tested for XMRV. However, this is not a general service I don't think and is linked to ongoing research. We will hear more of this in time, but I shouldn't say any more as what I know may be confidential (I am not sure but choose to be cautious regarding research). I am not one of his patients either. Bye, Alex
go on alex, throw it out there, you've given us a nibble, now i want a bite, lol. can u tell us if they found alot of xmrv or any for that matter.
Saw dr d today and he couldnt make the conference, bugger.
I had blood taken for the Bond study yesterday and I asked if she had any information about the conference. She said that she hasn't had a chance to speak with Sonya about it yet. I usually have blood taken at Bond but decided to go to Logan hospital this time. Wish I had gone to Bond, I was really hoping to hear something. She didn't think XMRV would be tested for. When I left I wondered if she meant in this lot of testing or at all in the study.
I get the feeling that they, Bond uni are against xmrv etc as they were orginally trying to link natural killer cell dysfunction with dr staines vasoneuropeptide theory of cfs. So i think if everyone tests positive for a retro , then it shoots down there study. They are keen on proving its some type of auto-immune disease, so its sort of a clash of interestes.
You can also try a Google Site Search
Separate names with a comma.