XMRV Workshop Program

[Rrrr]

diana sent another email and added this:

As to the webcast, it will be broadcasted live, and then after a few
days it will be posted again on the website. So it may not be available
for 2-3 days.

Kind regards,
Diana

 

[Cort]

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

No they said This is for academics and pharma only - Patients are not allowed. Basically I shouldn't have asked and just gone. After I asked my cover was blown anyway. I doubt I would have got it.

I would love to be Mindy's cameraman....I just get one trip to DC this fall (my brother lives there) so it looks like it will be the CFSAC meeting. Several patients are going, though, and we should get a good report.

Great job, Diana - now that's exciting - particularly the Q and A part......

 

[jace]

Pictureofhealth asked

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?)

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?)

I worked in an AIDS hospice in the early 90's. The answers are yes, and yes. Not so many people in the west get AIDS these days. Won't it be great when we can say the same for ME?

 

[August59]

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

What time will that be EST?

 

[Cort]

My take on the program from the XMRV Buzz page

It starts out with basic stuff; where the virus integrates itself into the cell's genome, which types of mice may contain XMRV-like sequences, and then there is a presentation on a 'novel gene product' of XMRV - which means? what - a protein?? In any case it appears to be something new to science which is always interesting.

In the next session there is a talk on animal 'models', which are animals researchers use to give XMRV to and then study. Animal models are critically important to understanding how pathogens function and its good to see researchers focusing on animal models so early. Dr Bishop will talk on 'Host Restriction Factors' which are factors in our cells that restrict viral replication. These factors may be one reason why XMRV appears to be different in prostate cancer tissues and the blood. Next comes a VERY INTERESTING lecture.

Dr. Villinger then talks on why XMRV Induces a Chronic Replicative Infection in Rhesus Macque Tissues and But Not in the Blood". We've been wondering where, if any place, XMRV is replicating? We know it hardly happens in the blood but is there a tissue somewhere (besides the prostate) where it's growing away? Dr. Villinger will tell us where in the bodies of these macaques XMRV has found a home. Is it the nervous system? (Wouldn't THAT be exciting/appalling...) How about the lymph nodes? The blood vessels? These are macaques, not humans, but this presentation could have profound implications.

The next talk by Dr. Kazak will fit in perfectly here because he will look at different variants in the XPRI receptor that XMRV uses to enter cells. These variants may determine which cells XMRV can get into and cannot. The next day starts out with the prostate cancer series which we will bypass, except to say that Dr. Singh is giving a lecture on pathogenesis. The section on CFS comes next.

Dr. Mikovits and Dr. Ruscetti chair the section and he (not Dr. Mikovits) will lead off with a talk on subject he was hardly aware of until two years ago - chronic fatigue syndrome. Dr. Hanson is next. Thus far she has the only CFS/XMRV NIH grant that has been funded. It's a full ROI grant which means (a) that she must have had some preliminary data and (b) that data must have been positive - so here we appear to have the third positive XMRV study to appear. We know she is studying Dr. Bell's pediatric patients (or formerly 'pediatric' now middle-aged patients) and that her rather complex study wll look at a variety of immunological and other features. One interesting question will be if she has blood samples from 25 years ago from these patients.

Right next to her Dr. Huber will presumably report on her negative study - an interesting juxtaposition indeed. Dr. Lo will report on the Alter/Lo positive finding and then we believe we'll have a second positive study report by none other than Dr. Mikovits herself. This appears to be the Invest in ME/WPI UK study that used an independent lab to replicate the WPI's results. The title of this one is intriguing "the Detection of Infectious XMRV in the blood of ....in the UK". One wonders if the inclusion of the word "infectious' in there could mean anything special about this study?

The Assay development section will start off by a lecture by a man who's never been able to find any XMRV in patient's blood - Dr. Switzer of the CDC. After the Alter/Lo study and the FDA's statement that 'sample preparation' could've played a role in the inability of the CDC to find XMRV this lecture could be interesting. (Dr. Vernon's test tube comments come to mind)... Could Dr. Switzer tell us something surprising here? aka 'we made a mistake?'.

Dr. Bagni will represent the WPI as she explains how to produce an antibody test for XMRV then we'll get good news about the development of XMRV immunoassays for large scale population studies. Finally Dr. Kearney - who may be part of the Blood Working Group will talk on his success in finding XMRV in blood products. (Things are definitely moving forward on the diagnostic front.)

In the last session on Epidemiology the Bannert lecture will indicate to us that he did not find XMRV but he also shows that the bug can infect blood cells - which sounds that he's replicated a key part of the Science paper (!) but still can't find the virus...We'll have another opportunity for another positive study when Dr. Blomberg talks about his search for XMRV in Sweden. Finally it appears that another member of the Blood Working Group will report multi-laboratory evaluations of different XMRV assays.

Dr. De Meirleir is believed to have a poster providing the results of another postive study and the identification of an immmunological signature associated with XMRV infection. At this point it appears there may be at least three positive studies and possibly four.

The 2-day Workshop indicates that Science is marching forward very quickly; indeed at lightspeed compared to what we are used to. If XMRV wins out this could be just the beginning; the medical research establishment (contrary to our experience) in the US, after all, is vast indeed. Months ago, Dr. Klimas reported that retrovirologists were hungry for something new...Might ME/CFS go from doormat to hot research ticket? That would be something indeed.

 

[pictureofhealth]

Thanks Jace that's really helpful (my background was in Coronary Care - aeons ago of course).
Thank goodness we have HIV/AIDS retrovirology experts as well as our ME/CFS doctors involved now - this is a dream scenario for us - that should make the unravelling of the commonalities and the distinctions between the 2 illnesses a lot smoother and quicker process!

 

[pictureofhealth]

Thanks Cort - its really helpful to see the breakdown presented like this on your Buzz page.

 

[leelaplay]

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

Thanks filfla4 and Rrrr - this is so exciting.

 

[Bob]

The title of this one is intriguing "the Detection of Infectious XMRV in the blood of ....in the UK". One wonders if the inclusion of the word "infectious' in there could mean anything special about this study?

Yes, it makes me wonder if they have found evidence for XMRV running in families in this study... If my memory serves me right, the WPI were interested in testing family members, and not just patients, for this study.

 

[August59]

This appears to be the place where the people with negative studies are going to get "schooled" on how to do it right and move on!!!

 

[urbantravels]

Cort, next time say "press" and see what happens! Surely they're allowing press, if Mindy's going. Probably also a certain Wall Street Journal reporter we know....

 

[Rrrr]

What time will that be EST?

5:15 pm EST

 

[HowToEscape?]

I tossed this out before, but I hope someone in CFIDS/ME/{other subgroup} activist circles is keeping in mind that research on one or more virii and research on how to cure us may not be the same thing. Whatever's wrong could have set off a dysfunction which doesn't resolve itself if the pathogen circulating in blood can be controlled, or even if the pathogen hiding in some organs can be flushed out. It could be that the state of a complex system is disrupted and become stable in the new, malfunctioning state. e.g. : virus could be treated, but an autoimmune disease remains. It can still be cured, but it requires a deeper insight into how and why it is broken.

Contagious virii are sexy research topics - people think "hey, I could catch that". But diseases affecting "definitely not me" need a campaign to get recognition, respect and Big Science based intervention. Big Science isn't necessarily the first place to look to maintain one's health, but for things such as polio, HIV and possibly this one they have the mojo.

 

[Daffodil]

howto..i agree. perhaps in some people, the damage is a different sort; the virus didnt affect certain cells or go deep enough, but i have been on the drugs a long while now and am still getting worse pretty quickly.

a researcher told me there is always the possibility that the env protein of the virus is fusing to xpr1 and creating problems that way, in which case they will have to find a way to stop viral gene expression - very hard.

 

[Rivotril]

Cort: from your buzz:

and then we believe we'll have a second positive study report by none other than Dr. Mikovits herself. This appears to be the Invest in ME/WPI UK study that used an independent lab to replicate the WPI's results. The title of this one is intriguing "the Detection of Infectious XMRV in the blood of ....in the UK". One wonders if the inclusion of the word "infectious' in there could mean anything special about this study?

mikovits did include the word infectious already in the science addendum :

Detection of an infectious retrovirus, XMRV, in blood cells of patients
with chronic fatigue syndrome

http://www.landesbioscience.com/journals/virulence/article/MikovitisVIRU1-5.pdf

so why would it this time mean anything special?
there could be new things in this new study but the title doesnt tell us because same title style was used in addendum also

 

[Bob]

I tossed this out before, but I hope someone in CFIDS/ME/{other subgroup} activist circles is keeping in mind that research on one or more virii and research on how to cure us may not be the same thing. Whatever's wrong could have set off a dysfunction which doesn't resolve itself if the pathogen circulating in blood can be controlled, or even if the pathogen hiding in some organs can be flushed out. It could be that the state of a complex system is disrupted and become stable in the new, malfunctioning state. e.g. : virus could be treated, but an autoimmune disease remains. It can still be cured, but it requires a deeper insight into how and why it is broken.

I agree with your thoughts HowToEscape... Sometimes I prefer to stay optimistic about the future and think about the positive possibilities rather than the negative possibilities... but i think that a good deal of realism is also helpful.
But, yes, even if they can stop the virus replicating, that doesn't mean a cure. But maybe it might ease the symptoms over time, and stop us from getting worse or having relapses. It might even give the body a chance to purge itself of the virus, if no further viruses are being created.
There's a lot of questions to be answered, and a lot of research to be done.
Once they start doing some anti-retroviral trials, then we might start getting some answers.
We also need a bigger study, on MLV-related viruses, to show how much of the ME population is actually infected with MLV-related viruses.
So far, a lot of people on the forum are testing negative for XMRV... So this retroviral research might not be relevant to a large number of us (I haven't been tested yet, so I don't know my status). But it might be possible that some people, who have tested negative to XMRV, would test positive for Alter's polytropic viruses rather than XMRV...
Judy Mikovits has now detected more than one type of XMRV, and also polytropic MLV-related viruses (can we call them PMRV's?) since the initial Science publication, so the evidence for retrovirus infection is increasing and getting stronger all the time.

 

[VillageLife]

the immunological signature is comparable to that of a patient with AIDS.

I'm really looking forward to hearing about Professor De Meirleirs work, sound like he has proven causality!?

 

[Cort]

@cort: from your buzz:



mikovits did include the word infectious already in the science addendum :

Detection of an infectious retrovirus, XMRV, in blood cells of patients
with chronic fatigue syndrome

http://www.landesbioscience.com/journals/virulence/article/MikovitisVIRU1-5.pdf

so why would it this time mean anything special?
there could be new things in this new study but the title doesnt tell us because same title style was used in addendum also

Didn't know that....When I looked at the titles of the other presentations nobody mentioned infectious - it stood out for me.

 

[Cort]

I'm really looking forward to hearing about Professor De Meirleirs work, sound like he has proven causality!?

That would be a big step towards that; it would certainly demonstrate XMRV is not an innocent bystander. It'll be interesting to see how strong the immunological signature is - that certainly sounds strong. It hasn't been easy at all to find an immunological signature for CFS as a whole but if you just have XMRV infected CFS patients that's a different story. Dr. Mikovits stated she's found a signature as well. If they are right then that's a BIG step for XMRV.

 

[VillageLife]

Didn't know that....When I looked at the titles of the other presentations nobody mentioned infectious - it stood out for me.

Yep Im in this study and the word Infectious stood out for me too.

Dr. Mikovits stated she's found a signature as well. If they are right then that's a BIG step for XMRV

I think one of the ones for HIV...is the Cd4 count. not sure it will be that for xmrv.