Chronic Fatigue Syndrome may simply mean that your body is fighting for you. Chronic Fatigue is relentless and while you may feel your body turned against you it may be quite the contrary. Know that your body is fighting for you. If the cause of your chronic fatigue has not been found, then suspect Epstein Barr Virus.
Chronic Fatigue Syndrome Criteria
Chronic Fatigue Syndrome is a debilitating fatigue that is not relieved with sleep and rest and has additional physical symptoms. It is a severe fatigue that lasts longer than six months and according to CDC should also present with at least four of the following physical symptoms:
- Postexertional malaise
- Unrefreshing sleep
- Impaired memory or concentration
- Muscle pain
- Polyarthralgia (pain in joints without inflammation in them)
- Sore throat, tender lymph nodes, and headaches are also on the list
Of this list of Chronic Fatigue Syndrome presentations, joint pain or inflamed joints are typically attributed to autoimmune disorders such as rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). Therefore, you may have been given the diagnosis of Lupus or RA. I will show you later how that is really relevant if you have had those diagnoses.
Your Time Line
I strongly recommend mapping out your medical story chronologically on paper – on more than one page if needed. We do that exercise with every new patient in our clinic and it is perhaps not fun and takes time, but it is very worth it. Draw a horizontal line at the bottom of the page all the way from left to right. On the very left write the year when you were born. Then start putting bubbles on the line, moving right, with your childhood infections, hospitalizations, new diagnoses, big life events etc… all the way to the current year on the right. Like I said, many people need more than one page!!! Let me tell you why this process is important for you.
Let’s say you had a mono when you were in college when you ate junk, studied and partied deep into the night and were invincible….or a really bad flu that you call “the worst flu” you ever had that would linger for weeks on end in a time of your life when you had a personal crisis and had a very high stress level. And you completely forgot about it until now as you read this blog because no one has turned your attention to how this can be relevant to your chronic fatigue.
At that time, you just rested and tried to get better. Perhaps you were told that you had mononucleosis: you were asked to get some rest, and it would go away. Nothing else could be done about it, as the doctor would say.
And perhaps just that happened. Eventually, you got better and forgot about it. But what if I told you that EBV, the virus that caused that infection, will live in your body for the years to come, and it may remain latent (meaning inactive) somewhere if your tissues, organs, muscles, joints, brain, thyroid, liver, etc.
So now we have a passenger for the rest of our life. But it may get worse. Let’s say as you get older, you are overworked, you have to care for your aging parent who is developing Alzheimer’s on top of busy family life and demands in your work. You get by with just any food and go to sleep too late, sleeping too little. Perhaps then, to top it, your spouse decides to leave you or you lose your job. Or you have a car accident. And for one reason or another, a doctor puts you on immunosuppressant medication, so your immune system is now turned off.
These are our lives, full of complications and stress. If you have a strong immune system, and if you take your supplements (especially in stress, I would strongly recommend daily high-quality vitamins, minerals, antioxidants, B complex and Omega 3), you may continue weathering the storms that hit you like I have. But in things are not as good, your EBV passenger can reactivate, and then continue activating. Welcome to many chronic and autoimmune disorders and CAEBV, the biggest elephant in the room in medicine.
So why do some people get Chronic Fatigue Syndrome and some do not?
It may really depend on how well your immune system is able to do its job, which is not glamorous- warding off each pathogen every minute of your life. We do not see it, hear it or taste it, so we do not remember that your immune system works for you full time, 24/7. Your immune soldiers, troops, antennae, surveillance cars, monitors, and alerts – are all cross-taking and quietly doing their job. I like to make that point with patients because if you struggle with a debilitating chronic condition, it is easy to start believing that your body has deceived you, and not only do you lose hope but you become anxious and depressed. And let me repeat – your body has not deceived you. It has just been fighting overtime to keep you alive.
When you feel your body has deceived you or you can no longer trust it, I need you to know that what is most likely happening is that your immune system is compromised, or turned off (e.g. steroid medications), and so EBV can reactivate. And in general, the more pain and symptoms you have, the more severe the reactivation may be.
Epstein-Barr can reactivate chronically. This is called Chronic Active Epstein- Barr Virus.
Chronic Fatigue Syndrome and Chronic Active Epstein-Barr Virus (CAEBV)
Let’s return to the scenario when you had a mono at one point. While there are hardly any cases recorded (in medical literature) of developing mono after primary EBV infection, there is evidence that “chronic mononucleosis syndrome” can occur long term, which includes weakness, aching legs, low-grade-fever [sometimes also intermittent], and depression (Isaacs, 1984), as well as headaches, myalgia (muscle pain), persistent fatigue, and lymphadenopathy (a disease affecting lymph nodes), and a prolonged recovery period that takes more than the typical month plus. (Eligio et al., 2010).
Take a look again at the Chronic Fatigue Syndrome criteria at the beginning of this article again and notice there is quite a lot of overlap with Chronic Fatigue Syndrome. If these mono-like symptoms persist, you need to test for EBV because this has been proposed as chronic active EBV infection (CAEBV) and THAT IS THE BIGGEST ISSUE I SEE CLINICALLY. THIS IS WHERE YOU REALLY GET SICK LONG TERM AND MEDICAL COMMUNITY IS NOT SEEING WHY. I cannot stress it enough.
Proposed Guidelines for CAEBV
Okano, M. et al proposed guidelines for diagnosing CAEBV that include: ‘unusual pattern of anti-EBV antibodies with raised anti-VCA and anti-EA, and/or detection of increased genomes in affected tissues, including peripheral blood” as well as “chronic illness which cannot be explained by other known disease processes at diagnosis. “(Okano, 2005) I am not sure why this is called “unusual” because I see this consistently in my practice.
Test!! Do not Guess!
Please go to your doctor and insist that they test: VCA IgM (that will probably be negative and that is fine- it will flare up with initial infection), VCA IgG, EA IgG and NA IgG (may also be negative).
Do we have research to support CFS and EBV link?
(Eligio et al., 2010) It is established that many cases of Chronic Fatigue Syndrome follow an acute viral infection. Studies of patients with infectious mono caused by EBV show that a small proportion will not recover from post-infection fatigue, and later develop Chronic Fatigue Syndrome. (“Chronic fatigue syndrome: going viral?,” 2010)
Moreover, when you look at research, immunological abnormalities in Chronic Fatigue Syndrome are comparable with CAEBV. (Klimas, Salvato, Morgan, & Fletcher, 1990) But did you know that Chronic Fatigue Syndrome used to be called “chronic Epstein-Barr syndrome?” (Klimas et al., 1990) The substantial overlap between CAEBV and CFS has been proposed by Eligio (2010) below.
In one medical family practice, 21% of 500 unselected patients seeking primary care for any reason were found to be suffering from a chronic fatigue syndrome consistent with CAEBV infection (Buchwald, Sullivan, & Komaroff, 1987). Symptoms included severe fatigue, usually cyclic, for a median of 16 months (range, six to 458 months, and no it does not seem to be a typo: that is 38 years!), associated with sore throat, myalgias (muscle pain), or headaches; 45% of the patients were periodically bedridden, but they did not have a recognizable illness. While this study cautions against claiming that any of these cases were caused by EBV, this is where testing EBV would be instrumental. Any medical practice could run a similar study internally and test all the EBV suspected patients. Will any medical doctor take me up on this challenge?
What about your diagnosis with RA?
Here is what research says: studies show cross-reactivity between EBV and human self-proteins (molecular mimicry), presence of the EBV genome in synovial membrane, and a cell-mediated response to the EBV within the joint (Toussirot & Roudier, 2007) The cross-reactivity – EBV encoded proteins share antigenic and sequence similarity to proteins found in the synovial (joint) tissues. Moreover, lymphocytes from patients with RA have decreased ability to limit outgrowth of autologous EBV infected lymphocytes. (Fox et al., 1992) Basically, EBV is the reason why your immune system is confused attacking the wrong cells.
And what about Lupus?
SLE may be caused by molecular mimicry too – by EBNA-1 (nuclear antigen) antibody cross-reacting with lupus-associated autoantigens. (Poole, Scofield, Harley, & James, 2006) Your lupus may not be anything more than CAEBV and your immune system fighting it.
If this article relates to you, please test for EBV and have hope that you can get better. Know that your body is working for and not against you and has been fighting for you for a long time. Work with a skilled functional nutritionist or functional doctor that is skilled in working with EBV. This will be hard do find as there are very few. That is why I am now training other clinicians to get the virus back into the latent phase and give people their lives back. You deserve to get better. My book on EBV will be coming soon and will have everything you need. I work with EBV patients one on one. Please never believe that your body has turned against you or that your immune system is now attacking your own body. It is infinitely too intelligent for that – it is fighting something, and there is a possibility that EBV is the reason. EBV can trick and confuse your immune system and hide in your immune cells. But your body has not turned against you!
Would you like to learn more about EBV?
If you are a clinician, and you suspect your clients/patients have EBV, visit here
If you are not a clinician and you suspect you have EBV, visit here
For more articles on EBV:
More are coming as I have time to write!!
Buchwald, D., Sullivan, J. L., & Komaroff, A. L. (1987). Frequency of ‘chronic active Epstein-Barr virus infection’ in a general medical practice. JAMA, 257(17), 2303-2307.
Chronic fatigue syndrome: going viral? (2010). Lancet, 376(9745), 930. doi:10.1016/S0140-6736(10)61432-8
Eligio, P., Delia, R., & Valeria, G. (2010). EBV Chronic Infections. Mediterr J Hematol Infect Dis, 2(1), e2010022. doi:10.4084/MJHID.2010.022
Fox, R. I., Luppi, M., Pisa, P., & Kang, H. I. (1992). Potential role of Epstein-Barr virus in Sjogren’s syndrome and rheumatoid arthritis. J Rheumatol Suppl, 32, 18-24.
Klimas, N. G., Salvato, F. R., Morgan, R., & Fletcher, M. A. (1990). Immunologic abnormalities in chronic fatigue syndrome. J Clin Microbiol, 28(6), 1403-1410.
Okano, M., Kawa, K., Kimura, H., Yachie, A., Wakiguchi, H., Maeda, A., . . . Imashuku, S. (2005). Proposed guidelines for diagnosing chronic active Epstein-Barr virus infection. Am J Hematol, 80(1), 64-69. doi:10.1002/ajh.20398
Poole, B. D., Scofield, R. H., Harley, J. B., & James, J. A. (2006). Epstein-Barr virus and molecular mimicry in systemic lupus erythematosus. Autoimmunity, 39(1), 63-70. doi:10.1080/08916930500484849
Toussirot, E., & Roudier, J. (2007). Pathophysiological links between rheumatoid arthritis and the Epstein-Barr virus: an update. Joint Bone Spine, 74(5), 418-426. doi:10.1016/j.jbspin.2007.05.001
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