Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 Oh boy do I agree with you Natasa .... well said. UK In a message dated 06/11/2009 10:18:44 GMT Standard Time, neno@... writes: I agree with Cheryl, there isn't yet a treatment that would address this virus specifically.virus specifically.<WBR>.. on the other hand if I ha would still be worth doing imo. as for waiting for the hard science bit... hm not so sure, that is a controversial issue isn't it. there isn't very much hard science at the moment on anything going on in autism, anything that we do for our kids could be criticised for the lack of hard science etc etc. (depends really on what one understands as hard science etc etc). the quality of the xmrv study was as high as they get, the quality of the PCR and antibody tests this lab was running for the study was as high as it gets... whether they watered it down for commercial tests now we don't know... But still so much in autism we don't know for sure and we still go and do it, as no point waiting for another decade or so till hard science catches up with our kids. so many pros and cons on this one Natasa > > Jill, > > I think I might wait on the testing. When I heard about the kits to test > for the virus, I asked Dr. G what he thought. He said the amount of > misdirection and misinterpretation (twisting science) is probably at an all > time high right now. He also said he would never advise a patient to give > out this kind of personal information or do this unless given much more > information and / or study validated by an IRB approved protocol. I too > wanted to know, but we may need to wait for more hard science before we > jump. Also I'm not sure the testing would change what we are already doing > to help our kids. > > Marcia > > > > [Non-text portions of this message have been removed] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 Bearing in mind how much information is stored already on our children (and if you access it as you are entitled to you would be surprised how much is inaccurate anyway e.g. one Physician we saw recorded that my child had a past hospital admission for infected eczema which was news to me another that blood was Rh neg when it was in fact Rh pos!) what implications do you envisage if a positive result was recorded. In a message dated 06/11/2009 17:15:13 GMT Standard Time, knardini@... writes: I agree with this.I don't want my son's records to have this information, if he does carry XMRV, until a lot more is known about it. Kristy From: _@..._ (mailto: ) [mailto:_@..._ (mailto: ) ] On Behalf Of Marcia Hinds Sent: Friday, November 06, 2009 2:01 AM _sjillboyer@..._ (mailto:sjillboyer@...) ; _@..._ (mailto: ) Subject: Re: XMRV TESTING Jill, I think I might wait on the testing. When I heard about the kits to test for the virus, I asked Dr. G what he thought. He said the amount of misdirection and misinterpretation (twisting science) is probably at an all time high right now. He also said he would never advise a patient to give out this kind of personal information or do this unless given much more information and / or study validated by an IRB approved protocol. I too wanted to know, but we may need to wait for more hard science before we jump. Also I'm not sure the testing would change what we are already doing to help our kids. Marcia [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 I agree with this.I don't want my son's records to have this information, if he does carry XMRV, until a lot more is known about it. Kristy From: [mailto: ] On Behalf Of Marcia Hinds Sent: Friday, November 06, 2009 2:01 AM sjillboyer@...; Subject: Re: XMRV TESTING Jill, I think I might wait on the testing. When I heard about the kits to test for the virus, I asked Dr. G what he thought. He said the amount of misdirection and misinterpretation (twisting science) is probably at an all time high right now. He also said he would never advise a patient to give out this kind of personal information or do this unless given much more information and / or study validated by an IRB approved protocol. I too wanted to know, but we may need to wait for more hard science before we jump. Also I'm not sure the testing would change what we are already doing to help our kids. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 If you get the test and it is positive how do you interpret it? I don't think we know that yet particularly for children. How do you treat it? We certainly do not know that yet. I think it is prudent to wait until more research is done. on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 I think it would explain a lot. Especially, if the child have elevated inflammation markers, all kind of infections, abnormal immune panels, seizures and even other autoimmune disorder. The XMRV virus attacks the immune system which leaves the child expose to many diseases. JR From: JOSKAT95@... Date: Mon, 16 Nov 2009 17:23:46 -0500 Subject: Re: Re: XMRV TESTING If you get the test and it is positive how do you interpret it? I don't think we know that yet particularly for children. How do you treat it? We certainly do not know that yet. I think it is prudent to wait until more research is done. on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 If you have the funds, I don't see why not. For some parents, it may help put some pieces of the puzzle in place. In addition, if some sort of treatment becomes available you can avoid the inevitable rush of parents trying to get their children tested and move forward with treatment right away. If you can do it and want to, go for it! I, for one, would be interested in hearing if any of our kids test positive. Rhoda Re: Re: XMRV TESTING > > > > > > If you get the test and it is positive how do you interpret it? I don't > think we know that yet particularly for children. How do you treat it? We > certainly do not know that yet. I think it is prudent to wait until more > research is done. > > on > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 I suspect that Jaun is right. To know the incidence of XMRV in ASD and other spectrum kids will tell us if this could be " the " or " one of the " culprit retro-viruses that Dr G has talked about for many years. This incidence in CFS is very significant when compared with the general population. The medical cascade that the virus could be causing in CFS is being studied - so that better treatments can be developed. The CFS medical condition and ASD medical condition are both neuro-immune. In an undeveloped brain, we all know the effects - we live with them every day. If the incidence of XMRV is high in ASD kids it needs to be known asap so the autism myth can be blown away and replaced with a " treatable medical disease " path. Whether you as a parent want to know now if your child has XMRV is a personal choice. There being no treatment for the virus could be one reason. Another could be not wanting it on a record at this point - the insurance companies might run amok with the information should the virus become proven in the disease course - much the same way as happened with HIV for AIDS patients. No-one wants what coverage we can get now shut down! Perhaps Kathy's note of prudence for individuals knowing is wise. However blind testing with controls should be done post haste. _____ From: [mailto: ] On Behalf Of Sent: Tuesday, November 17, 2009 9:19 AM Subject: Re: XMRV TESTING But what good is the test if we have no treatment for XMRV yet? - > > > I think it would explain a lot. Especially, if the child have elevated inflammation markers, all kind of infections, abnormal immune panels, seizures and even other autoimmune disorder. The XMRV virus attacks the immune system which leaves the child expose to many diseases. > > JR > > > > groups (DOT) <mailto:%40> com > From: JOSKAT95@... > Date: Mon, 16 Nov 2009 17:23:46 -0500 > Subject: Re: Re: XMRV TESTING > > > > > > If you get the test and it is positive how do you interpret it? I don't > think we know that yet particularly for children. How do you treat it? We > certainly do not know that yet. I think it is prudent to wait until more > research is done. > > on > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.