tag:blogger.com,1999:blog-22576999.post4914731390657309722..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: NJ CFS Conference - Update on XMRV by Dr. MikovitzSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-22576999.post-17486995339153166852010-10-23T21:03:12.649-04:002010-10-23T21:03:12.649-04:00Thank you for taking the time to do this. I knew ...Thank you for taking the time to do this. I knew this would be way over my head so I didn't even attempt it.dominiquehttp://www.4wallsandaview.com/#noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68902840827991764362010-10-23T01:20:37.764-04:002010-10-23T01:20:37.764-04:00"Other speakers also mentioned that politics ..."Other speakers also mentioned that politics are involved. The prevailing theory seems to be this: if the CDC confirms that XMRV, a new, dangerous, and transmissible retrovirus, is present in people with CFS (and the CDC has estimated the number of adults in the US with CFS to be 4 million), then they have a huge public health crisis on their hands."<br /><br />I really hope Dr. Mikovtz did not mention this because there are far to many ridiculous conspiracy theories circulating around about XMRV. It will also also greatly hurt her reputation among the people she needs to get data published, get funding, and do the large scale researched needed to move XMRV forward.<br /><br /><br />"Rumor is that the National Cancer Institute (NCI) has been told by someone high up in the government to pursue whether XMRV is involved in prostate cancer but should distance themselves from CFS. Though I hate to believe something like this could actually happen, the speaker from NCI at CFSAC last week was the one who suggested that contamination might be responsible for the positive XMRV results in CFS. Dr. Mikovitz said that person has seen all of the data proving contamination is impossible."<br /><br />Dr. Mikovtz really should not be saying things like this, this will just make her be looked down upon by other researchers and prospective journals she needs to publish data in. Even begin a CFS patient I am saddened that she is spreading rumors, it makes me loose a lot of respect for her and I donated to WPI and have a positive XMRV test. The truth about XMRV will come out with time, far to many extremely talented and well respected researchers are working on this for them not to get to the bottom of it.Luke Shttps://www.blogger.com/profile/18092987090327808826noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57031254089047903962010-10-21T05:21:37.101-04:002010-10-21T05:21:37.101-04:00As usual, a conscise and useful summary. Thank you...As usual, a conscise and useful summary. Thank you so much.<br /><br />I wonder if anyone has ever done a study on the damage to a country's economy as a result of CFS/ME? There seems to be such a lack of political will to face up to this health crisis, but it seems to me a little investment could go a long way and surely that would be a good thing economically (as well as from a humanitarian point of view - obviously)?<br /><br />Hey ho. Thanks again Sue.Dusty Bogwranglerhttps://www.blogger.com/profile/14378437798741434260noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-21118315329104169112010-10-21T00:15:09.764-04:002010-10-21T00:15:09.764-04:00FYI, Just found more lecture notes over at CFS Pat...FYI, Just found more lecture notes over at CFS Patient Advocate Blog<br />http://cfspatientadvocate.blogspot.com/2010/10/njcfs-conference-day-dr-judy-mikovits.html<br /><br />He has also posted notes from other lectures from the same conference.Baffledhttps://www.blogger.com/profile/16763003920036754454noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-9032396905922589682010-10-20T22:32:45.315-04:002010-10-20T22:32:45.315-04:00Wow Sue! Thanks you so much for your incredible su...Wow Sue! Thanks you so much for your incredible summary of the conference! I'm still reading/digesting it. BTW, did you know that my brother is Autistic? I have always felt that there was/is a very strong link between the two (CFS/ME & Autism) genetically.Martinenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-53349558262318911942010-10-20T22:20:56.558-04:002010-10-20T22:20:56.558-04:00Excellent summary!Excellent summary!Faith Newtonnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-35085588011532506712010-10-20T19:32:07.290-04:002010-10-20T19:32:07.290-04:00Sorry for the typo - I had pages and pages of note...Sorry for the typo - I had pages and pages of notes to type and I'm still crashed! It's been fixed.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-67869884072220601312010-10-20T19:26:44.615-04:002010-10-20T19:26:44.615-04:00thanks for the info.
btw, isn't it spelled &...thanks for the info. <br /><br />btw, isn't it spelled "prostate", not "prostrate"?Davidhttps://www.blogger.com/profile/10778342601996392913noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-57799838910479753152010-10-20T19:20:30.786-04:002010-10-20T19:20:30.786-04:00Great summary, Sue! Thank you for taking the time...Great summary, Sue! Thank you for taking the time to write this.Laurelhttps://www.blogger.com/profile/01688914443102913569noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39037006007646202462010-10-20T18:47:21.863-04:002010-10-20T18:47:21.863-04:00The Conference proceedings are not yet available, ...The Conference proceedings are not yet available, but I will keep checking and post when they are.<br /><br />For last year's conference, they made a DVD. I don't know what their plans are for the 2010 conference.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-35998440389506368662010-10-20T18:31:09.041-04:002010-10-20T18:31:09.041-04:00Thanks for this write up Sue! It's disturbing ...Thanks for this write up Sue! It's disturbing to read about the politics and a relief to hear Dr. M talk about why there are so many negative studies. <br /><br />I was getting discouraged about them.<br /><br />I don't understand why the government would want to distance themselves from cfs but then they really blew it with HIV (I worked in SF during the AIDS crises and saw similar dynamics then as now).me/cfs warriorhttps://www.blogger.com/profile/01299057722862223585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19168058572939211702010-10-20T18:21:41.482-04:002010-10-20T18:21:41.482-04:00Thanks for the detailed post. This is good stuff....Thanks for the detailed post. This is good stuff.<br /><br />Do you know if the conference procedings will become available? I would love to read some of the presentations.Baffledhttps://www.blogger.com/profile/16763003920036754454noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-83607556906676878942010-10-20T17:00:38.592-04:002010-10-20T17:00:38.592-04:00Sue, you are a remarkable resource of information....Sue, you are a remarkable resource of information. Bravo for posting all this amazing information. Thank you so much.Shellihttps://www.blogger.com/profile/03068094486297918345noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56720548201881001272010-10-20T16:48:06.264-04:002010-10-20T16:48:06.264-04:00Wow. I am beginning to really distrust our govern...Wow. I am beginning to really distrust our government when it comes to medical issues that come up ....The truth needs to be told always, and it is not being told with CFS, XMRV, Lyme, etc. etc. etc. On so many levels it is wrong and unethical.<br />The info you shared here was awesome. Thanks. Even wtih my heavy brain fog right now I was able to take it in.Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-30647959397342203572010-10-20T14:09:06.971-04:002010-10-20T14:09:06.971-04:00Thanks, Sue. I hit "print" so fast on th...Thanks, Sue. I hit "print" so fast on this one! I'm getting asked so many questions about CFS in general and XMRV in particular because of my book. <br /><br />Some of the inquiries are in emails but many come at places I've given book talks. (I've been able to do a few "book talks" if the stores aren't too far from my house and if I accept that I'll feel very sick and be bedbound for a few days afterward- it's worth it though -- people are SO grateful to have someone talking about CFS in public) <br /><br />I had what I thought was the latest information from a webinar by Dr. Komaroff, but this adds so much new data to what I had.<br /><br />Thank you so much.Tonihttps://www.blogger.com/profile/05729837575450453607noreply@blogger.com