XMRV Workshop Program

[Cort]

The program for the XMRV Workshop is attached (I hope)

 

[glenp]

Thank - you for posting this Cort. Are you able to go??

glen

 

[Esther12]

Thanks cort.

If the Lo paper is positive (don't we have some reason for thinking it is? - did I just make that up?), this looks pretty one-sided:

Session 4:
Chronic Fatigue Syndrome
Chairs: Dr John Coffin & Dr Judy Mikovits
11.15AM: Invited lecture on Chronic fatigue syndrome: F. Ruscetti
11.45AM: Prevalence of XMRV in CFS patients and healthy controls: B. Huber
12.00AM: XMRV in Chronic Fatigue Syndrome: A Pilot Study: M. Hanson
12.15AM: Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors :S. Lo
12.30AM: Detection of infectious XMRV in the peripheral blood of chronic fatigue syndrome patients in the United Kingdom: J. Mikovits
12.45AM: Discussion

1.00PM: Lunch

I wonder if Huber's doing any double checking?

I'm still restraining my excitement about all this. I've spent the last 8 years thinking CFS was a meaningless diagnosis dumped upon me because they couldn't be bothered to try to find out what was really wrong... that 'CFS' could be caused by a retrovirus seems so crazy. This workshop smells pretty positive to me though.

A retroviral cause would be so perfect for kicking around the quacks. That just about compensates for it's likely incurable nature.

 

[Esther12]

Oops... missed this less good sounding section:

Session 6:
Epidemiology and Screening
Chairs: Dr Charles Boucher & Dr Rika Furuta
4.15PM: No evidence for XMRV in CFS and MS patients in Germany despite the ability of the virus to infect human blood cells in vitro.: N. Bannert
4.30PM: Search for XMRV in Swedish patients with myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and prostate cancer; methods and results.: J. Blomberg
4.45PM: Multi-laboratory evaluations of XMRV nucleic acid detection assays: G. Simmons
5.00PM: Discussion
5.15PM
Discussion on the Findings
Moderators: Dr Jonathan Stoye and Dr Charles Boucher


It's never easy, is it?

 

[Cort]

Honestly I blew it with this workshop - I made the mistake of calling them up and asking them if patients could go....and then I listened to them...BIG MISTAKE

 

[Cort]

Oops... missed this less good sounding section:

Session 6:
Epidemiology and Screening
Chairs: Dr Charles Boucher & Dr Rika Furuta
4.15PM: No evidence for XMRV in CFS and MS patients in Germany despite the ability of the virus to infect human blood cells in vitro.: N. Bannert
4.30PM: Search for XMRV in Swedish patients with myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and prostate cancer; methods and results.: J. Blomberg
4.45PM: Multi-laboratory evaluations of XMRV nucleic acid detection assays: G. Simmons
5.00PM: Discussion
5.15PM
Discussion on the Findings
Moderators: Dr Jonathan Stoye and Dr Charles Boucher


It's never easy, is it?

No but I think the good outweighs the bad; there are these two positive studies in there. It appears that Dr. Hansen found XMRV in Dr Bell's pediatric patients ( which is why she got such a good grant), there's the positive UK study (that replicated the WPI's methods) and I believe Dr. DeMeirleir should have a poster in there that describes how he found XMRV in Belgium. We're looking ALOT better!

Even the Bannert finding is interesting because he shows that the bug can infect blood cells - which means that he's replicated a key part of the Science paper (!) but still can't find the virus (). I wonder what that Blomberg paper will show - could be another positive result. (What does he mean 'search for? Did he find it or not?)

I think the Simmons paper may report on the DHHS findings.....whew! Lots of stuff - not a Workshop to miss!

 

[Rrrr]

there is a closing plenary that is due to be webcasted!!!

 

[Cort]

Does that mean it is live? Is that a video?

 

[leelaplay]

Does that mean it is live? Is that a video?

It sounds it, doesn't it. I spent about 15 minutes looking through the site to see if there was more info on the webcast, but couldn't find any.

Rrrr and I both have emailed the conference organizers to get details on the webcast so hopefully we'll hear back soon.

Here's the final afternoon (sept 8) program as of right now:


Session 6: Epidemiology and Screening
Chairs Dr Charles Boucher & Dr Rika Furuta

4.15PM No evidence for XMRV in CFS and MS patients in Germany despite the ability of the virus to infect human blood cells in vitro.
N. Bannert O_18

4.30PM Search for XMRV in Swedish patients with myalgic encephalitis/chronic
fatigue syndrome (ME/CFS) and prostate cancer; methods and results.
J. Blomberg O_19

4.45PM Multi-laboratory evaluations of XMRV nucleic acid detection assays
G. Simmons O_20

5.00PM Panel led Q&A session (webcast)

6.00PM End of Plenary session

 

[leelaplay]

Also, a new speaker, A. Wlodawer -Crystal structure of XMRV protease,
has been invited to be part of the first session Tues Sept 7 afternnon:

Tuesday 7 September

1.00PM Opening workshop S. LeGrice

Session 1: Setting the Scene ----- Virology

Chairs: Dr Jonathan Stoye & Dr Nobert Bannert

1.15PM Invited lecture: Basic Virology
J. Coffin

1.45PM Invited lecture: Viral Integration
S. Chow

2.15PM Invited lecture: Crystal structure of XMRV protease
A. Wlodawer

2.30PM Screening mouse genomes for XMRV-like elements
O. Cingoz O_01

2.45PM A novel gene product of the prostate cancer associated retrovirus, XMRV
R. Molinaro O_02

3.00PM Discussion

http://www.virology-education.com/h...9-953537140AC11213.PDF&doc_name=program_final

 

[sensing progress]

Too bad Dr. Alter will not be presenting. Although I guess Dr. Lo will be presenting their PNAS study.

 

[Bob]

I'm still restraining my excitement about all this. I've spent the last 8 years thinking CFS was a meaningless diagnosis dumped upon me because they couldn't be bothered to try to find out what was really wrong... that 'CFS' could be caused by a retrovirus seems so crazy. This workshop smells pretty positive to me though.

Esther, that's exactly how I've always felt about ME... I was absolutely blown away when they found this one stupid little retrovirus! I never thought it would be such a straightforward answer.

I wonder if Huber's doing any double checking?

Yes, that's what I thought... I've been wondering if maybe she found some MLV-related viruses, which weren't XMRV, and mistook them for contaminants.
She does seem pretty interested in the XMRV research because it coincides with her own retrovirus research.
(Personally, I thought the bad press she got recently was unjustified, after watching the Invest in ME conference DVD. I think she's an honest, curious, scientist.)

 

[pictureofhealth]

Honestly I blew it with this workshop - I made the mistake of calling them up and asking them if patients could go....and then I listened to them...BIG MISTAKE

Hi Cort, all journalists/reporters need PA's and photographers/cameramen. Why not ask Mindy if she needs backup crew ie you?

 

[Daffodil]

it says XMRV causes a replicative infection in tissues of monkeys...so then the ARV's should work. i was worried one would need to target integrated latent virus.

but i am worse after several months on the ARV's...wtf

 

[pictureofhealth]

I think unfortunately we are not going to be able to simply translate the HIV/AIDS treatments to all ME/CFS patients.

The inflammation aspect of ME/CFS and how immune dysfunction is impacted specifically in ME/CFS in relation to the XMRV/MLV retroviruses will turn out to be just as important IMO.

This is not the same type of retrovirus as HIV and the mechanisms behind the immune system dysfunction in AIDS v ME - i'll bet hugely - will turn out to be very very different.

For eg. how does a retrovirus contribute towards the difficulty swallowing and the need for tube feeding that some severe ME patients are experiencing? (Does this happen with HIV I wonder?)
How is XMRV affecting the brain to bring about orthostatic intolerance & faulty mechanisms for maintaining blood pressure and temperature fluctuations that we experience in ME?
Also, why are patients experiencing tremors and fitting (this happens in AIDS too)?
Why do the majority of us have almost total alcohol intolerance (huge clue for researchers here surely)?
What is causing the powerful headaches, light and sound intolerance and in some cases intolerance to touch? (Do AIDS patients experience light, sound, touch sensitivity I wonder?)

etc.

I think that there will be so many factors at play that it may not be a simple case of using the HIV anti retrovirals - I think we will need some that are designed and targeted specifically for XMRV and MLV's once we know more about what these retroviruses need in the body to be able to function & replicate.

 

[calzy]

I dont see Dr. Klimas on here, and she said she is going.

 

[calzy]

Honestly I blew it with this workshop - I made the mistake of calling them up and asking them if patients could go....and then I listened to them...BIG MISTAKE

Cort, I dont get it? Did they "dis" you?

 

[filfla4]

Q&A will be a live webcast. http://videocast.nih.gov/summary.asp?live=9582

 

[Impish]

Cort, I dont get it? Did they "dis" you?

More likely he was told that it is researchers only. If he had just paid and shown up they probably would have let him in

 

[Rrrr]

this is so freaking exciting! as filfla4 just posted above, we will be able to watch the closing plenary LIVE!!!!!!!!!!!!!!!!!!
(Q&A will be a live webcast. http://videocast.nih.gov/summary.asp?live=9582)

and apparently it is not just the closing plenary that will (eventually) be made available via webcast. i got this from diana, the conference's logistics coordinator:

Thank you for your e-mail. We were awaiting the webcast link, which is
http://videocast.nih.gov. This link can now also be found on the xmrv
webpage under 'registration' and under ' program'.

Presentations will be placed on our website only after explicit consent
of the speakers within 2-3 weeks after the workshop.

Best wishes,

Diana