She handed out copies of her powerpoint slides. I have those in pdf form.
"The editors of Science asked that the WPI remove all references to Chronic Fatigue Syndrome before they would publish the article."
The WPI stuck to their guns! And Science acquiesced. To me this is a huge signal that the paper was solid.
This talk was December 2nd and it has been killing me not to shout this at the top of my lungs every time I leave the house.
Also, some of her more unique comments concerned the proportion of her patients that were similar to the WPI patients in the XMRV paper and the fact that ARUP (a huge lational reference laboratory) is presently developing XMRV tests. ARUP's associate medical director in charge of retroviral testing is Dr. Ila Singh. She is the author of one of the XMRV prostate papers. Dr. Singh recently hosted Dr. Minkovitz for a talk at the Univ. of Utah.
We are also planning a Conference in April or May of 2010. There
would be a morning meeting for medical professionals and an
afternoon meeting for patients and providers. This is still in the
planning stages and nothing is definite at this point. Again, if
you would like to have make comments for ask questions, please send
an email to firstname.lastname@example.org <mailto:email@example.com>
Dr Bateman is really passionate about CFS I can tell, she is also very caring, jusdt from looking at her talking and interacting with the audience. Those who have her as dr are lucky.
She's done a good job at grounding us at where we are, what we know and what we don't know, and that we are really early in the researches,and use caution or restraint into testing for XMRV as of now. Commercial testing is not quite there yet.
On another note, good luck to the person who will volunteer to transcribe this lecture... It's a long one!
Dr. Bateman is not my doctor but I live about 6 blocks from her office. I wouldn't be surprised to find myself in one of her studies. I see Dr. Montoya at Stanford. I have been in and out of his care for 15+ years (there was a period when I had to move in with relatives and could not afford to travel). Personally, I think that Montoya is also a fantastic doctor and I have some infectious findings and mid-brain abnormalities that are in the realm of his other specialty - toxoplasmosis.
That said, anyone with Dr. Bateman as their doctor is indeed very lucky.
What I think is going to happ...What I'm hoping will happen is that people will come out of the woodwork with this disease when we have a diagnostic test. What happens now is people of visibility either don't get the diagnosis or they don't want anyone to know they have it. Many people in very visible positions.
If the test is legitimized, if it does select for a group of people with CFS. If it does prove to be associated tightly with CFS, it's going to bring this disease out of the shadows. And I do believe funding will come better in that way too because it won't...it'll have a great name, a real pathogen, and everyone will have sympathy - that they've never had. Grrrrrrrrr!!!!!
I think the first thing you're gonna hear are different centers reporting on what they've found in the next round of research. So, the CDC, and all the CFS sites, and retrovirologists, and whoever is kind of putting their resources together to study and measure XMRV in a group of patients.
What's problematic is - we don't even know if everybody will choose their patients the same way. So, it's gonna take some time and I predict what you're going to hear are widely varying numbers. From none, you know in the Reno study it's like all the patients have XMRV, I believe there will be reports where no XMRV is found in CFS patients and then you're going to find everything in between.
And it's still going to have to do with the very problems we've always had - is we don't know how to define our patient group (and we're not going to redefine it by the test, later) and the other thing is it will probably relate to the assays and the kind of the quality of the tests that are being done and whether they're accurate or not.
And it may take some time to sort out the differences. But...I know it's frustrating, but that's science. Ya know, if four different groups come out with four different results, they've got to put their heads together and find out why they're not all getting the same results and that will lead us to the next set of questions - about how we define patients and how we improve the assays.
So, that's going to be the first, I think, round of activity - what you're going to hear soon. And also, I think that the information from the National Blood Bank - that kind of information - is not going to have to wait for a publication. When their study is done, they will announce what they find. And I think that would happen fairly quickly.
But, again, that kind of study is hindered by the technology. Do they have a good assay? Do they know they using the right assay? And are the going to study patients in just one group or are they going to look across groups - and they're going to look across groups. And they're going to look at groups from around different areas and compare it to groups in Nevada and groups that are known to be positive for the virus. This is going to take a little bit of time.
Ya know, we just did that exercise study and we could study about 2 patients a week. Ya know, we did 60 patients. It just takes time. And even drawing the blood, having one person come in and draw the blood, and take the blood, and handle the blood correctly, and take it to the lab...if you do that in 1000 patients, we're talking about a big, big, big time consuming project. So, projects are happening everywhere, but it's just hard to get it done quickly, because you can't just run it up to ARUP (Associated Regional and University Pathologists) and run it through a machine.
I have been doing a search on their site for XMRV everyday for the last two weeks.
They are a huge lab and do lots of specialized tests like this. I have been to several "centers of excellence" just to have my blood drawn and sent back to S.L.C. because its one of the only labs that does a specific test. I may have mentioned this earlier - Dr. Ila Singh, one of the XMRV/prostate authors is the director of ARUPs retrovirus division.
It's not much samuel, but I'm glad you could read the little bit I transcribed. To watch the video, I had to download a plugin for Firefox, which semi-crashed my system. But after I brought the system back up, I was able to watch the video.