Guest guest Posted December 4, 2009 Report Share Posted December 4, 2009 from Dr Teitelbaum's website http://www.endfatigue.com/health_articles_c/Cfs_fm-dr_oz_tackles_xmrv.html Got CFS? Dr. Oz Tackles the XMRV Virus On Thursday's show (12/3), Dr. Oz did a great job introducing the new research showing the presence of XMRV viral infections in CFS (Chronic Fatigue Syndrome). As the earlier show I appeared on focused on general fatigue, I have been encouraging Dr. Oz to do a segment focusing on CFS, and on XMRV in particular, and I think he did an excellent and compassionate job! The XMRV research has a number of important implications: 1. CFS is validated within the mainstream medical community as a real, physical and devastating illness. The XMRV virus study clearly documents that CFS is a real and physical illness, again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific nitwits. Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should help speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness! 2. Testing. Information on doing the XMRV virus blood tests can be found at VIPDX <http://www.vipdx.com/press/> (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND). The cost is $650, and the profits from the test will help support the Whittemore Institute (WPI), which sponsored the XMRV study and is playing an outstanding role in CFS advocacy. The testing will not immediately effect most people's treatment and it is not clear if insurance will cover it yet, so it is OK for those who can't afford the testing to wait (you will benefit from others who do the testing and thereby further help us understand the illness). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers a good reason to do the testing. Also, it is reasonable to simply do it to see what it shows. Do both tests in the XAND panel though, as one test being negative does not mean the infection is not there. You don't need the grief of a " false negative " test. A negative panel does not mean you don't have the illness, so don't panic if your test is negative. We'll discuss test interpretation more over time. 3. XMRV Virus Treatment. This is where perspective is critical. Although there are a number of antiviral medications for retroviruses (because of AIDS research), we do not know which ones will work against XMRV or in what combination. It will take at least a few years for research to answer this question (and possibly many years). Because of this, it is important that we harness the power of the Internet and the CFS community to begin to answer this question more quickly (which will also help guide future research). Although I recommend people begin with other proven treatments (see below) while this issue is addressed, knowing the CFS community to have many wonderful cutting edge activists, people will be trying different mixes of anti-retroviral " cocktails " anyway. If any of you try these, please post your experience with the treatments (include the medication names and doses, how long used, whether or not it worked and side effects) on our End Fatigue community discussion board <http://www.endfatigue.com/forums/viewforum.php?f=18>. I invite you to note this information even when you first start treatment, and update our community occasionally so that we can follow along with you. We would like to hear your experiences whether or not the treatment has helped you. Meanwhile, there is a lot that you can do NOW to start feeling better. 4. Treatment -- What Can I Do NOW? The good news is that there is a lot you can do now to both feel better and probably suppress the virus. As Dr. Oz noted, about 4% of the healthy population is XMRV positive, and only about 1% have CFS. This means that a healthy immune system can often suppress the virus (only about 20% of those with the virus get sick), which is really good news! Doctors at the Fibromyalgia and Fatigue Centers (FFC) <http://www.fibroandfatigue.com/> are staying up to date on XMRV testing and treatment, and we are adding the information into our diagnostic and treatment protocols as it becomes available. There is good reason for hope in this new research, and the good news is that there is also a lot that you can do NOW! We will keep you informed ;-) Love and Blessings, Dr. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Its a classic example of the self supporting agency syndrome. Agencies only get funding if they have a problem/enemy. This inhibits actual problem solving on a pragmatic level and encourages a narrow mindset. Consider the DEA and the war on drugs, the interior department and the squandering of our natural resources and HUD and the housing crisis. From: Bill klimas <klimas_bill@...> Subject: XMRV Date: Friday, July 2, 2010, 9:33 AM  This a very interesting OP Ed piece about the history of XMRV and the CDC. Specifically the investigator Switcher has been a historic supporter of Dr. Reeves. The CDC has had a problematic year where CFS is concerned. The long-time CDC principal investigator for CFS research Dr. Reeves was reassigned on February 14, which many critics believe was because the scientist was embarrassing the agency. Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agency�s CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and �metabolic strain,� as Reeves himself explained in a 2009 paper. If the CDC had found the retrovirus, it would have negated its 20-year affair with CFS as a psychological problem. Now that two other government agencies have found XMRV and other studies due out this summer have also found the retrovirus, critics point out that the CDC is in a no-win situation and beginning to look like the odd man out.<br <b>Information Release, CFS Central </b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 There is a huge definition difference between Reeve's CFS and the true CFS. But even so, the methodology of this article has to be wrong because even 3% of controls have this virus and yet they found not ONE person? I question the validity of this study. Do you have the link to this article you are talking about Bill? - > > This a very interesting OP Ed piece about the history of XMRV and the CDC. Specifically the investigator Switcher has been a historic supporter of Dr. > Reeves. > > > > The CDC has had a problematic year where CFS is concerned. The > long-time CDC principal investigator for CFS research Dr. > Reeves was reassigned on February 14, which many critics believe was > because the scientist was embarrassing the agency. Privately, insiders > have told CFS Central that they did not expect the CDC to find the > retrovirus because the agency�s CFS definition has been watered down > from one neuroimmune disease to five different combinations of > depression, insomnia, > obesity and �metabolic strain,� as Reeves himself explained in a 2009 > paper. If the CDC had found the retrovirus, it would have negated its > 20-year affair with CFS as a psychological problem. Now that two other > government agencies have found XMRV and other studies due out this > summer have also found the retrovirus, critics point out that the CDC > is in a no-win situation and beginning to look like the odd man > out.<br <b>Information Release, CFS Central </b> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 http://beforeitsnews.com/news/90/673/CDC_Malfeasance_Exposed_As_US_Government_Ag\ encies_Find_XMRV_Virus_In_Blood_Of_ME_CFS_Patients.html Bill From: <jlhank80@...> Subject: Re: XMRV Date: Friday, July 2, 2010, 10:18 AM  There is a huge definition difference between Reeve's CFS and the true CFS. But even so, the methodology of this article has to be wrong because even 3% of controls have this virus and yet they found not ONE person? I question the validity of this study. Do you have the link to this article you are talking about Bill? - > > This a very interesting OP Ed piece about the history of XMRV and the CDC. Specifically the investigator Switcher has been a historic supporter of Dr. > Reeves. > > > > The CDC has had a problematic year where CFS is concerned. The > long-time CDC principal investigator for CFS research Dr. > Reeves was reassigned on February 14, which many critics believe was > because the scientist was embarrassing the agency. Privately, insiders > have told CFS Central that they did not expect the CDC to find the > retrovirus because the agency�s CFS definition has been watered down > from one neuroimmune disease to five different combinations of > depression, insomnia, > obesity and �metabolic strain,� as Reeves himself explained in a 2009 > paper. If the CDC had found the retrovirus, it would have negated its > 20-year affair with CFS as a psychological problem. Now that two other > government agencies have found XMRV and other studies due out this > summer have also found the retrovirus, critics point out that the CDC > is in a no-win situation and beginning to look like the odd man > out.<br <b>Information Release, CFS Central </b> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Sandy, Just forwarded two emails with info on what we did with our son. The XMRV stuff is very exciting. They found it in a large percentage of kids with autism. Just had a big conference and once they substantiate results I think the help for our kids will come quickly. I have been told it is only in 3% of the general population and 90% of the Chronic Fatigue people. But in any case, these findings will put the people out of business who describe this as a developmental or psychiatric disorder. Not to mention those who are using our desperation as parents to make money on the things that don't work and possibly harm. These findings will allow research and solutions to go full speed ahead. Now they will finally say our kids are sick instead of damaged. I can't wait for that to happen, Best, Marcia XMRV Marsha, I am currently watching You Tube videos on XMRV. Is it something the mother or father carries? My daughter has never has any type of blood products. Have you had you child tested for this? I would appreciate any information you have or if you have a great website with info I could read. Is Dr G looking at this too? Thanks so much! Sandy Quote Link to comment Share on other sites More sharing options...
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