Last week I was excited to see that the Dr. Oz show would be covering Epstein-Barr Virus. I thought to myself, “Finally – someone is going to explain how bad ME/CFS feels for us since they are related”. Boy, was I in for a big letdown. The whole segment on Epstein-Barr Virus lasted a very short time and they never mentioned one time about how EBV and ME/CFS are related. So I sent Dr. Oz’s show an email and I also left them a message on their Facebook page about it. I’m sure neither were read by Dr. Oz’s staff but I feel I at least got my disappointment off of my chest.
What Dr. Oz did mention about EBV was what we already know – approx. 95% of the population has been infected with the virus; EBV can cause problems in others while in most people the virus lays dormant and never causes any problems. He said that EBV can cause “extreme exhaustion” and can be responsible for mono, lymphoma, MS, and some other chronic illnesses but that was about it.
When I went on Dr. Oz’s site to check more on EBV, I saw where he had written this:
Very rarely an active EBV illness persists beyond 6 months. The fatigue is unrelenting and often confused with chronic fatigue syndrome, which thus far has no solid association with EBV. Doctors can identify an active EBV infection because the levels of EBV antibody circulating in the blood remain very high. They can also detect the virus itself when organ tissue is sampled and tested for EBV DNA. Chronic infection can affect the lungs, liver, bone marrow and eyes.
I have to disagree with him on this and I will keep sending emails to his show about it. A lot of the top CFS researchers believe that EBV is a huge factor in ME/CFS. The CFS specialists I have seen have told me that when tested, they find that the majority of ME/CFS patients have reactivated levels of EBV. EBV titers will show whether someone has been exposed to the virus and if there are any current reactivations of the virus.
I also sent an email to Adrienne Dellwo, who runs the About.com: Fibromyalgia & Chronic Fatigue blog on her thoughts. Here is a copy of our correspondence (Thanks again, Adrienne for your help!).
My email to Adrienne:
Hi Adrienne, It’s Sandy from Fighting Fatigue.org. I’m a little confused about something I read today and I wondered if maybe you could help me figure it out. I have had CFS for 20 years and I was always told by doctors and CFS specialists that reactivated titers of EBV are common in people with CFS, because my blood tests will always show this. But today on the Dr. Oz show, they did a segment on EBV and didn’t mention anything about CFS. So I checked his website to see why it wasn’t mentioned and he> says that chronic EBV is often misdiagnosed as CFS. So now I’m wondering if I’ve been misdiagnosed all along. What are your thoughts on EBV?
Hi Sandy, This is a tough one. On one hand, you could say that CFS is supposed tobe ruled out if the symptoms are attributable to something. Re-activatedEBV is something, so does that rule out a diagnosis of exclusion? Going by the letter of the diagnostic criteria, you shouldn’t be diagnosedwith CFS is there are any findings. However, the diagnostic criteria alsospecify what should be ruled out, and they don’t mention viralreactivation. Also, as we learn more about CFS, we can’t label everyfinding of abnormality a “misdiagnosis.” While I understand the position of those who say EBV reactivation is itsown entity, I have to side with the top CFS experts who believe that EBVis a major contributor to CFS in a large subgroup. Nancy Klimas, Lenny Jason, Martin Lerner and a bunch of other researchers are in this camp, and it seems to me that they’re good company to keep on this issue! Regardless of the diagnosis, if you have reactivated EBV, treating it should certainly help. How much depends on what else is going on in there, but it would at least be a step in the right direction.
As Adrienne states, regardless of whether or not EBV is related to ME/CFS, if we do show reactivated titers of the virus they need to be treated. Before I was diagnosed with ME/CFS I was diagnosed with mono. I was told to get home immediately, get in bed and stay there for however long the doctor ordered. How many of you were first diagnosed with mono, then ME/CFS?