*15th July* Dr Lucinda Bateman & Vincent Racaniello - Webinar!

[Otis]

Sorry about that, Otis. There was a technical problem with the recording that caused the out of sync-ness. The problem appears to have been fixed, and the recording of today's webinar will be available in a couple days. It was such a bummer that Dr. Bateman got cut off and couldn't get out of mute. The plan is to incorporate some of the questions she would have addressed into another form on the website.

Bummer. Mabye she'll do it via email?

 

[Karin]

I don't think this date is correct. In 1977 Japanese researchers first identified the disease ATL (Adult T-Cell Leukemia) in a cluster of patients. In 1979, American researchers first isolated and identified the virus HTLV-1. In December 1980, Robert Gallo, et al., published the first paper linking HTLV-1 with T-cell lymphoma. Frank Ruscetti was a co-author(see link below).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC350514/pdf/pnas00499-0477.pdf

[By the way, that paper was published in that "dubious" publication "The Proceedings of the National Academy of Sciences (PNAS) :Retro smile:]

Thanks for the correction, Forbin, my notes might have been wrong.

 

[eric_s]

Wow, this sounds interesting. I'm waiting for the video and the additional answers by Dr. Bateman. I hope there will be published facts out soon that confirm the positive expectations. Until then i will just lean back and wait..

I think in our case, even if it's not so simple to treat, there's such a huge number of people with CFS that things will go as fast as possible, once the basic facts are established. Once the necessary resources are put into something, everything is possible, i believe.

 

[serenity]

that is a nice post Eric_S.
thanks

 

[jspotila]

Slides and recording

The slides and recording of today's webinar are now available on the CFIDS Association website: http://www.cfids.org/webinar/series2010-past.asp#10

The recording is a Windows media file. The office is working on converting the file to upload to the Association's YouTube channel.

 

[Frickly]

Awwww.....George.... Frickly loves George....here George.....

FRICKLY!!!!! George love Frickly, slurp lick, slurp

 

[usedtobeperkytina]

One thing that I heard that worries me.

Dr. Racaniello talked about HTLV. I believe he said that it was like XMRV with very few copies in the blood, difficult to detect, and that it spreads in the body similar to XMRV (not positive about the spreading but it sounded similar). He then went on to say that there are no anti-retrovirals that work angainst HTLV. The anti-retrovirals that work against HIV work because it is reproducing like mad.

I think he also said that the way HTLV causes disease has to do with what cells or organs are next to infected cells. So even if they can eradicate the HTLV, the disease process will not be stopped.

Maybe this was my pessimistic understanding.

In my mind I had it all worked out in a very simple manner. I would be tested and find I have XMRV. I would take ARVs (maybe current ones or maybe ones that will be developed later). I would then be better.

Now i am not so sure.

Lynn

That really hit home that we are making a big leap

This reminds me of what Coffin said in the October CFSAC meeting, easy for vaccine, hard to treat.

Tina

 

[jimbob]

This webinar was total bovine secretion! Vernon trying to keep xmrv off topic, what a ****. Laughing and joking around, with what's at stake here, totally unacceptable! the mute on bateman, please! I hope their not paving our future with this piece of garbage, because we'll all be screwed! Sorry, but it's been too long since the science pub, not to be further along then this!

 

[Ash]

The slides and recording of today's webinar are now available on the CFIDS Association website: http://www.cfids.org/webinar/series2010-past.asp#10

The recording is a Windows media file. The office is working on converting the file to upload to the Association's YouTube channel.

Ugh, that appauling G2M3 codec - lucky I was a geek in a former life or I'd have no hope of viewing this.

I can understand why it is in that format from the webinar, but why don't you have a link to the codec for people who aren't geeky enough to figure it out themselves? By default on Windows XP it only plays audio - maybe it is fine if you have a Vista or Win7 PC but I'm certianly not rich enough to update PCs constantly.

 

[thegodofpleasure]

Don't know why they invited Racaniello to give this webinar. Judging from some of the things he has said, I think his knowledge of XMRV (& other MuLV's) is limited at best. Would have liked to seen someone more knowledgeable invited, e.g. Judy Mikovits, Ila Singh, one of the Ruscettis?

I suspect Racaniello is there to basically say "everything is a.o.k., science will solve all your problems., subscribe to my podcast. Yadda Yadda Yadda." i.e. Stick to the status quo.

You got it about right Garcia - prophetic but disappointing.

TGOP

 

[eric_s]

Ugh, that appauling G2M3 codec - lucky I was a geek in a former life or I'd have no hope of viewing this.

I can understand why it is in that format from the webinar, but why don't you have a link to the codec for people who aren't geeky enough to figure it out themselves? By default on Windows XP it only plays audio - maybe it is fine if you have a Vista or Win7 PC but I'm certianly not rich enough to update PCs constantly.

I can't install the codec, it says "The installer could not locate a suitable folder to install into". I've tried on two different PCs (Windows XP, both) and get the same error. I'm logged in as an administrator. Without the codec the clip won't play, i don't even get audio.

I really want to hear Dr. Bateman's statements on XMRV and especially on the current research. Can somebody help me? I can't find a solution to this anywhere on the internet.
If you could tell me how to install this or create a file with another codec that would be great.

Thanks a lot

 

[Doogle]

The free VLC media player plays the files for me. http://vlc.us.com/best-media-player/vlc-media-player.php?brand=vlc.us.com&s=google&c=vlcuscom_bm2_bingadm_CS_PG_XB_WB_AT_SK&k={keywords}&pk=56-3

 

[shannah]

Sorry, but it's been too long since the science pub, not to be further along then this!

I too am seriously disappointed that we're not further along in this after 9 months of the initial announcement. We were all so hopeful last fall that we'd have some definitive answers by summer and here we are still at basically square 1. It becomes harder and harder to hang in there. I largely blame Wesseley and Reeves for their efforts to undermine and thwart the research thus sidetracking the forward movement.

 

[bakercape]

I really

feel that the CAA is downplaying the importance of XMRV and it's making me mad. It Seems like we may have a virus that causes CFS or many cases of CFS. Yet they are not having any of the big players in it talk at their webinar about XMRV.
Also I would think they would be trying to raise money and attempting to find a way to help get a true replication study done. We are 9 months down the road and no replication study! WTF
I know it's good not to put all your eggs in one basket but the potential of XMRV is enormous for us all and if they will support blood flow studies I should think they would make XMRV studies a top priority and ask people to donate money immediately for a honest replication study.
When the CDC/HHS stopped the publication af the Alter paper why did the CAA not issue a c-act alert and have people writing letters like they do for other smaller issues? Where's the advocacy on XMRV from the CAA with regards to XMRV.
I know dr. Vernon wrote a good piece on the failures of the CDC study but who really reads that but us.

 

[Cort]

One thing that I heard that worries me.

Dr. Racaniello talked about HTLV. I believe he said that it was like XMRV with very few copies in the blood, difficult to detect, and that it spreads in the body similar to XMRV (not positive about the spreading but it sounded similar). He then went on to say that there are no anti-retrovirals that work angainst HTLV. The anti-retrovirals that work against HIV work because it is reproducing like mad.

I think he also said that the way HTLV causes disease has to do with what cells or organs are next to infected cells. So even if they can eradicate the HTLV, the disease process will not be stopped.

Maybe this was my pessimistic understanding.

In my mind I had it all worked out in a very simple manner. I would be tested and find I have XMRV. I would take ARVs (maybe current ones or maybe ones that will be developed later). I would then be better.

Now i am not so sure.

Lynn

That really hit home that we are making a big leap

I think we know too little about XMRV to know how this will turn out. It could be that its replicating like mad elsewhere in the body; ie it could be like HIV. HTLV causes disease, I think by turning on the genes it sits next to in the cell. Thus far they haven't found that that's happening with XMRV.

 

[Cort]

Well done George on that review of Dr. Ruscetti's talk! I would guess the NK and T Cell burnout that Dr. Klimas has found probably reflects the immune system shooting bullets that fail to hit the target again and again.

 

[eric_s]

The free VLC media player plays the files for me. http://vlc.us.com/best-media-player/vlc-media-player.php?brand=vlc.us.com&s=google&c=vlcuscom_bm2_bingadm_CS_PG_XB_WB_AT_SK&k={keywords}&pk=56-3

Thanks a lot, Doogle, it's working.

 

[Sing]

Here's my one addition: Dr. Bateman spoke about all the different possible definitions and cohorts for CFS and then she said--that the key symptom in her view is post-exertional malaise/fatigue

 

[jspotila]

Ugh, that appauling G2M3 codec - lucky I was a geek in a former life or I'd have no hope of viewing this.

I can understand why it is in that format from the webinar, but why don't you have a link to the codec for people who aren't geeky enough to figure it out themselves? By default on Windows XP it only plays audio - maybe it is fine if you have a Vista or Win7 PC but I'm certianly not rich enough to update PCs constantly.

A link to codec is now on the page for the webinar recording: http://cfids.org/webinar/series2010-past.asp#10

Thanks, Ash, for bringing that to our attention. The conversion to YouTube format is in process, and the video will be up on the Association's YouTube channel next week.

 

[eric_s]

feel that the CAA is downplaying the importance of XMRV and it's making me mad. It Seems like we may have a virus that causes CFS or many cases of CFS. Yet they are not having any of the big players in it talk at their webinar about XMRV.
Also I would think they would be trying to raise money and attempting to find a way to help get a true replication study done. We are 9 months down the road and no replication study! WTF
I know it's good not to put all your eggs in one basket but the potential of XMRV is enormous for us all and if they will support blood flow studies I should think they would make XMRV studies a top priority and ask people to donate money immediately for a honest replication study.
When the CDC/HHS stopped the publication af the Alter paper why did the CAA not issue a c-act alert and have people writing letters like they do for other smaller issues? Where's the advocacy on XMRV from the CAA with regards to XMRV.
I know dr. Vernon wrote a good piece on the failures of the CDC study but who really reads that but us.

Dr. Mikovits said in her recent interview that she knows of 2 replication studies that are being done. So i think we don't have to worry too much about that. Probably the CAA is also aware of this.
I think they are doing a good job. In case of the Dr. Alter study they contacted him or his office and got the reply that they posted on their facebook pages. They probably know a bit more than us but can't share it all. There seems to be a lot in the pipeline, we are just nervous because we don't know about everything that's being done and we don't know the results yet. Once the Alter study and the Bateman/Singh/Light study is out we might know a lot more. I like what Dr. Bateman said about her study, that we will certainly hear about it and that it will provide new information. Also that silence is good news and that her team has been silent since march.
I will not take anything as fact until it's published but i think before those 2 studies are out and negative, there's no reason to be too worried or too aggressive.