OK, given section 9 a go. Got slower and slower as I got more tired. I had trouble hearing some of it so it's my best guess. Feel free to correct me if you disagree. Hope it's helpful.
Segment 9:
Testing for XMRV
Q&A Antibodies
So, there are some issues here. That blood test only identified 67% so if I ordered a blood test on you right now and it was negative, what would happen to your soul? You know, and yet it might not really be negative, in fact its got a one chance in three of being wrong. The blood test that we dont have yet that we will have very shortly, those tests are going to be improved on.
When the first HIV blood test came out it wasnt any good either. You know, it went through stages and stages and stages before we got a really good one. Dont rush to get the test. Why, because youre not going to act on that test quite yet. The knowledge of being positive is not going to give you an anti viral prescription from anyone right now because we dont know which one to give and if its safe or if its toxic. The HIV drugs are not been gentle, OK, and you guys are really tender. So, if you knew your status today it really wouldnt change anything.
If they are right 99% of you are positive. And if they are wrong then 95% of you are positive.
So when? Soon, really soon. But you wouldnt be able to bear the false negative right now so be careful OK. There are kits already out there, they want cash and theres no reimbursement from your insurance provider yet. I was talking to this great scientist at the VA and he said, you know, my lab develops tests. Thats what we do. Whats wrong with the tests you got? Oh, I could fix that and he got all jazzed and Im thinking, damn, get another guy in the field and you know, and hes fixed your test, thats great. So these people, theyre already out there and they know how to do it and tests will improve.
If you dont have this virus what if you didnt. Well, you know, thats good news too because that puts you in a different group and we know not to do all that toxic stuff to you. So thats an important thing to do too. So dont be discouraged even if youre negative.
We talked about these other people that might also actually be infected. We dont know. These are just people we are going to be looking at. The Gulf War Illness group Im desperate to see right away because it could change the whole direction of that work and they have a fair amount of money to do that work.
So the conclusion, it really is a big thing. Its a big thing. You should be very excited. Its a very hopeful thing. Yeah, the research is already underway, more to come. The more we can get funded the more focused and intense we will be in getting this work done as quickly as possible. That work we were already doing plays right into this. All the genomics work and all the immunology work. That is all critical to the better understanding of this illness and how this virus plays into it.
Those of you that are in my good day bad day study, its nice because weve got your stuff already in the freezer and well be looking at this virus as quickly as we can get access to the assay. That study, thats a really important study. It looks at people in relatively better times and worse times and well know if viral load is causing that. If theres anything about this virus. Were already looking at all the immune parameters and endocrine parameters and everything under sun. But were trying to understand what mediates relapse.
There are people in this room that have been in my genomics study where we put people on a bike and made them sick on purpose and then watched why they got sick. That was a heroic thing to do, we appreciate it, weve learned a tremendous amount from that study. We want to continue doing that study. Were fundraising to do the last of the chronic fatigue group. Were going to run 15 more chronic fatigue patients and then we ran out of money. Im looking to finish that study. You can be sure well look at viral expression now that we know that we should be looking for viral expression.
So, all these thing are important. They all tie together,
You can make a difference. You can make a difference by volunteering for studies, you can make a difference by spreading this word. If any of you guys know someone thats too sick to get out of the house and so discouraged that they look like they are going to give up , make them feel optimistic. Thats your job. OK, this is not a good time to give up. And then finally be charitable and find charitable people to help you with that. Give, we need funds, we really do.
Im going to stop my official talk and take questions and answers.
Beth.
(Question from the audience) Over time as you discover and find the blood tests to test your patients and then you find that patients whove done better over time actually do have the virus. What does it mean for those types of patients?
(Answer) Patients who are recovering despite having the infection. Well, I can tell you what I would anticipate that their immune systems are recovering. I would anticipate that people who could control their viral infection will do better. So, what youll hear in peoples histories very frequently, that have had this illness for a long time and had long, long, long periods of recovery, is that they tend to only get ill again if they are recovering, during times when they have a massive infection of some sort or some big immune event.
Now Ive had it flip the other way. Ive had more than one patient who were just very ill and just cruising on very ill and they got something terrible like a pneumonia that put them in the hospital with a high fever and huge immune response and when they came out of it they were much better from their chronic fatigue. Its like getting their immune system so maybe it was the fever, maybe it was the immune system response, maybe with all the cytokines but sometimes youll see the flip of that.
But I think that people that are remit, relapse, remit, relapse - most of you guys know your pattern. Most of you guys relapse because you do too much and you crash. Youre all crashers. Because you dont know when you are feeling well to stop acting like you are 100% because when you are feeling well you are not 100%. But, thats a little different. Thats your body being out of balance and you dont have the reserves of a normal person, you literally use them up and you crash.
The best question is the flip. If people are getting better over time, why are they better. If you look at their immune systems, they are better because their immune system is better. And that has clinically been my experience. The natural killer cells are behaving better, their immune activation is less and activation drives the virus.
