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!
Information on doing the XMRV virus blood tests can be found at VIPDX (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 Peterson 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. 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! Our published placebo controlled study shows that, on a scale of 0 to 10 (with 0 being “dead” and 10 being “perfectly healthy”), the average CFS patient improved from a 3.5 to a 6.2 score at 3 months and to almost a 7 score at 2 years (by which time most people had improved to where they could wean off of most treatments). Treatment was based on our “SHINE Protocol.” (Our free symptom analysis program can determine what treatments will help YOU feel the best, as specific treatments vary quite a bit from person to person.)
Doctors at the Fibromyalgia and Fatigue Centers (FFC) 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. Our antiviral IV treatments have also been very helpful for many FFC patients over the years.
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,