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 email@example.com <mailto:firstname.lastname@example.org>
Some of you may know this but for those who don't, Dr. Bateman's sister passed away from CFS complications several years ago. Dr. Bateman has been a huge hero for us as well.
Wow, Shane, and she's your doctor? Lucky you! did you put her on the "Roll of Honour" thread?
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.
Just making sure you are getting down time, young lady. You don't want to see my dark side. Or maybe you do! I'll go look for it.
I too will wait for transcription or another video format.
Thank you for the transcript so far! Kim you are great!