From the 1st annual XMRV conference

[VillageLife]

ok the conference has started again for day 2..............
Heres the latest from Twitter......

ClevelandClinic: #Cleveland Clinic researcher helps organize international #XMRV meeting

ClevelandClinic #@juneholley thanks. Yes, more updates to come today from the #XMRV workshop.

ClevelandClinic #Dr. Eric Klein, chairman of Cleveland Clinic’s urological institute, presenting data on detection of #XMRV in prostatic secretions.

ClevelandClinic #Klein: Clinicians face the challenge of trying to identify aggressive prostate cancer versus non-aggressive #XMRV

ClevelandClinic #About 90% of men choose to be treated for prostate cancer, but all therapies have significant side effects, Klein says #XMRV

 

[VillageLife]

ClevelandClinic An estimated 20% of all cancers worldwide are caused by infectious agents & its not unlikely that prostate cancer could be as well #XMRV

ClevelandClinic We need to be able to sort out aggressive vs. non-aggressive prostate cancer, and #XMRV potentially could help do that, Klein says

 

[VillageLife]

ClevelandClinic Klein: It’s not out of the realm of possibility that prostate cancer could be an infectious disease #XMRV

ClevelandClinic Klein: We no longer believe that #XMRV only infects men

ClevelandClinic The technique you use to find #XMRV largely impacts your ability to detect it, thus why there have been conflicting studies, Klein says

ClevelandClinic There is a strong likelihood that there is a family of #XMRV viruses

 

[Sasha]

Great that our Cleveland Clinic tweeter is up and running again! I suppose the most interesting stuff will be from the CFS sessions this afternoon (this evening in the UK!).

Meanwhile here's the Cleveland Clinic Twitter link again.

I don't know if they can count our hits on their tweeting? If so, a good way to make our prescence felt. Does anybody know?

 

[Sasha]

Cleveland Clinic is tweeting every couple of minutes now - is there any way of thanking them for tweeting? Anybody on Twitter who can thank them and tell them that lots of us are watching them, including overseas?

 

[pictureofhealth]

Well, tweeting is an interesting way around the recording rules and regs listed on the main Virology Eduction website for the Conference:

"Photographs, audio and video recording -
Photographs as well as audio and video recordings are not permitted at the official meeting sessions. Only the official medical writer appointed by the organization may make recordings. All presentations that we were granted permission for will be posted on the workshop website as soon as possible after the meeting is finished, provided the speaker has given permission to do so."

 

[VillageLife]

yep heres the link....http://twitter.com/ClevelandClinic
and all you have to do is refresh the page!! there updating every few mins.
:victory::victory::victory::victory:

 

[Sasha]

From CC Twitter: "Klein: The presence of XMRV RNA in urine is significant because such data can provide the basis for a urine-based #XMRV detection assay that is noninvasive, rapid, and easy to perform, avoiding the difficulty of obtaining blood or tissue biopsies."

Wow! They mean they could actually do a urine test for XMRV?! Did we know this?

 

[Sing]

Next Steps

Gottesman said that for our specific concrete grievances, we need to write a letter stating those grievances and concerns and send that to the Director Collins's office. He promised us that it will be addressed and forwarded to the right person within the Director's office. (If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most affect or move you.)

Thank you, George, for another very helpful contribution in this clear account of a key meeting before the conference with patients, Dr. Peterson, NIH officials (that is all I am remembering).

Can you give us the email or regular mailing address for Francis Collins (Dr.?), Director of NIH, so that we can email him with our views on the key needs ahead for ME-CFS research, etc.?

Thank you!

Sing

 

[Sing]

Next Steps

Gottesman said that for our specific concrete grievances, we need to write a letter stating those grievances and concerns and send that to the Director Collins's office. He promised us that it will be addressed and forwarded to the right person within the Director's office. (If patients are willing to send emails to Director Collins, we ask you to select something from the list of points Bob raised in his statement, found below. Pick the one or two points that you feel most affect or move you.)

Thank you endlessly, George, for your efforts at reporting this very important meeting before the conference between patients, families, NIH officials and Dr. Peterson! Your contributions are always really helpful. (See George's post #55, if you missed it, to read in its entirety.)

Please tell us the email address for Dr. Francis Collins, the Director of NIH, so that we can email him our sense of the key needs for upcoming research on CFS, etc.

Thanks,

Sing

 

[Bob]

Here's CFS Central's short blog entry about yesterday's conference... it's quite optimistic:

http://www.cfscentral.com/2010/09/xmrv-conference-day-1.html

 

[SOC]

What I do now is fractional tasking. For example, if I am driving I ignore all irrelevant...LOOK OUT YOU FOOL!

LOL! Sounds familiar.

"Fractional tasking" -- that's a phrase I'm incorporating into my repertoire. I was just wondering the other day how to explain my current state to those who knew me in my pre-illness, super multi-tasking days.

 

[Sasha]

Dr Ila Singh talking now about XMRV in not only prostate cancer but CFS - see the Cleveland Clinic Twitter - just keep using the refresh button for updates.

 

[George]

Thank you CC

One fast tweeter!!!!

# Singh taking measures to avoid contamination & ensure consistency; handle only 1 patient sample at a time to avoid contamination #XMRV #CFS less than 20 seconds ago via HootSuite

# Patient & control samples are processed in identical manner; all samples freshly collected. Other studies haven't done so. #XMRV #CFS 2 minutes ago via HootSuite

# Both patients & controls in Singh's study are from the same geographic area -- will help find minor variations in the virus. #XMRV #CFS 4 minutes ago via HootSuite

# Today @NUFarmersMarket: the return of @DimAndDenSum! Also, pick up the season's first apples or fresh salsa being made today! 4 minutes ago via HootSuite

# Singh is doing a study w/200 healthy volunteers and 105 #CFS patients. #XMRV 5 minutes ago via HootSuite

# Singh found it interesting that one fourth of #CFS cases from Nevada developed a lymphoma. #XMRV 7 minutes ago via HootSuite

# The amount of #XMRV infection in the prostate can vary based on how deep you look at the tumor tissue, Singh says 8 minutes ago via HootSuite

# Singh: 27% of prostate cancers have XMRV; the higher the Gleason score, the higher the likelihood of finding #XMRV 9 minutes ago via HootSuite

# Singh's lab started studying #XMRV after @ClevelandClinic discovery 10 minutes ago via HootSuite

# Up next at #XMRV workshop: Dr. Ila Singh, Associate Professor, Department of Pathology, University of Utah to address prostate cancer & #CFS 11 minutes ago via HootSuite

# that is noninvasive, rapid, and easy to perform, avoiding the difficulty of obtaining blood or tissue biopsies. #XMRV 27 minutes ago via berTwitter

# Klein: The presence of XMRV RNA in urine is significant because such data can provide the basis for a urine-based #XMRV detection assay … 27 minutes ago via berTwitter

# There is a strong likelihood that there is a family of #XMRV viruses 44 minutes ago via berTwitter

# The technique you use to find #XMRV largely impacts your ability to detect it, thus why there have been conflicting studies, Klein says about 1 hour ago via berTwitter

# Klein: We no longer believe that #XMRV only infects men about 1 hour ago via berTwitter

# Klein: It’s not out of the realm of possibility that prostate cancer could be an infectious disease #XMRV about 1 hour ago via HootSuite

# An estimated 20% of all cancers worldwide are caused by infectious agents & it’s not unlikely that prostate cancer could be as well #XMRV about 1 hour ago via HootSuite

# We need to be able to sort out aggressive vs. non-aggressive prostate cancer, and #XMRV potentially could help do that, Klein says about 1 hour ago via HootSuite

# About 90% of men choose to be treated for prostate cancer, but all therapies have significant side effects, Klein says #XMRV about 1 hour ago via HootSuite

# Klein: Clinicians face the challenge of trying to identify aggressive prostate cancer versus non-aggressive #XMRV

Hey Villagelife I hope you don't mind I just pasted the whole log in case some one has trouble with the tweet site. Hugs and Licks

 

[ukme]

Have they stopped? Person is no longer tweeting..

 

[Sasha]

Poster session II coming up in 15 minutes and then at 11:15am EDT (4:15pm UK time) the CFS stuff... exciting... exciting...

Judy Mikovits presenting 12:30pm EDT (5:30pm UK time) on detection of XMRV in UK patients... I can hardly stand it...

 

[pictureofhealth]

Wonder whether the XMRV urine testing was Prostate Cancer specific, or can be used also in CFS? As Sasha says, Dr Singh is studying both, so we should have an answer to that at some point.

Re other tissues/non-invasive sampling methods - The eyes are a direct extension of the brain - if XMRV hangs out in the brain/neurological tissues, I wonder whether tear samples would have XMRV - shouldn't be any shortage of sample supplies there! Also nasal swabs of sinuses might detect XMRV. Apparently there is no true lymphatic drainage of the brain as such, so would by products of metabolism or infection from the brain exit via the sinuses? Lovely topic for discussion - aren't we just glad someone else has this exciting job?!! .. just pondering out loud ... for those of you who haven't fainted from the subject matter already!

 

[eric_s]

Poster session II coming up in 15 minutes and then at 11:15am EDT (4:15pm UK time) the CFS stuff... exciting... exciting...

Judy Mikovits presenting 12:30pm EDT (5:30pm UK time) on detection of XMRV in UK patients... I can hardly stand it...

Yes, these are probably THE decisive moments... incredible

 

[George]

Thank you endlessly, George, for your efforts at reporting this very important meeting before the conference between patients, families, NIH officials and Dr. Peterson! Your contributions are always really helpful. (See George's post #55, if you missed it, to read in its entirety.)

Please tell us the email address for Dr. Francis Collins, the Director of NIH, so that we can email him our sense of the key needs for upcoming research on CFS, etc.

Thanks,

Sing

Hey Sing I'll try to get you some e-mails or get a list, but it wont be till tomorrow. Right now I'm trying to keep up with stuff and post. (cross eyed dog, grins) You could ask Muffin, 'cause she is the queen when it comes to finding contact information, if you need it like today.

 

[George]

If you can test for it in urine of men (i.e. prostate cancer) then seems like you might be able to test for it in urine of women. I don't know that's kinda tricky thing. I don't remember the bladder or kidneys being a home for XMRV in Monkey study. But the sex organs were. hummmmm

The fact they can get a positive from urine at all scares the piss out of me really. Dang, look at that puddle, now I've got to clean it up or Cort will take a rolled up news paper to my nose.