Virtually everyone is exposed to Epstein-Barr Virus (EBV). If you catch it as a child you usually feel nothing, but if you’re an adolescent you’re likely to come down with infectious mononucleosis – and a greatly increased risk of ME/CFS.
The more they pulled on the EBV string in ME/CFS – the more they found.
After German researchers noticed some strange EBV antibody readings in their ME/CFS patients, they dug deeper …and deeper. The more they pulled on that EBV string the more they found.
Check out the five holes in the immune response to EBV and the evidence of increased EBV levels in people with chronic fatigue syndrome (ME/CFS) in the first of a series of blogs on EBV on Simmaron Rising
Great find. I’m surprised this study hasn’t made bigger waves in the couple months since it was published. It seems like it could be one of the most important CFS studies to come out in a while, but maybe I’m reading too much into it.
I agree with you. They found increased viral loads and immune holes; next we’ll see how far it all goes, I guess. 🙂
This discussion mentioned the significance of blood vs plasma for detection. I wonder if these guys are also aware of Van Elzakker’s search for viral infections in (vagus) nerve tissue.
Perhaps the EBV virus is latent in the nervous tissue, which could explain the neurological and autonomic symptoms.
I hope it all comes together – before I come apart.
I should add that when I first came down with ME, I thought I had mono, so I was tested, but the result was negative. As per this study, maybe the lack of an EBV antigen indicated a lack id adequate immune response and not the absence of EBV itself.
In my view this could be the cause for a subgroup of ME patiënts. I think this is big news but maybe i am wrong.
EBV makes such sense; could it be that the cause of ME has been hidden in plain sight all along, something so obvious it has just been ignored? Often the solution to a problem is beautiful in its simplicity even though the initial problem seems so complex.
So many cases of ME are triggered by Glandular Fever and the time lag of a latent infection could account for the others. It could be behaving like Hepatitis C or as Polio did in the past. Glandular Fever has a reputation for incomplete recovery and for recurring. In sport they know about its potentially destructive nature and athletes can be advised to take a year off to rest and recover. Glandular Fever can be a very nasty infection indeed and the possibility of long term complications seems to be hugely underestimated.
I think the most significant recurring symptoms in ME are; sore throat and painful swollen glands in the neck and arm pits with bodily aches and mild fever. I have often thought that these symptoms must be a sign of persistent infection.
There are many accounts of people having recurring symptoms years after infection. Surely we have been missing something in not considering Glandular Fever as the culprit when this infection behaves in a way that is so like ME itself. It’s perfectly logical to think it could cause ME. This is an interesting paper about a link between Glandular Fever and developing MS. http://www.independent.co.uk/life-style/health-and-families/health-news/childhood-glandular-fever-linked-to-multiple-sclerosis-6170950.html
Its 25 years since myself and three of my children, fell ill with Severe ME after Glandular Fever. In all these years I have never heard of anything that has had more potential as a possible cause for ME as EBV and Glandular Fever and I imagine the Vagus Nerve Hypothesis would fit in with it.
17 years after developing ME my three children went on to develop other serious disease. One has Gastroparesis (paralysis of the stomach) a connection here with the Vagus Nerve as it controls the stomach. Another has developed MS and Ulcerative Colitis and the third Coeliac disease and Keratoconus (eye disease of the corneas). My niece also became ill with ME after Glandular Fever and she went on years later to develop intractable Inter-cranial Hypertension that has to be controlled by shunts.
NHS Choices; “Someone with Glandular Fever is contagious for at least two months after initially being infected with EBV. However, some people can have EBV in their saliva for up to 18 months after having the infection. A few may continue to have the virus in their saliva on and off for years”.
Wikipedia; “fatigue and a general feeling of being unwell may sometimes last for months.[6] Fatigue lasts more than one month in an estimated 9–22% of cases.[3] In cases where fatigue lingers, it generally passes spontaneously within 2 years.[3] Mild fever, swollen neck glands and body aches may also persist beyond 4 weeks.[6][9][10] “
My daughter had mono 20 years ago. Never was the same after. Always had pain and fatigue issues. Then 17 years later she developed Gastroparesis. At that point she got diagnosed with lyme and her gastroparesis improved with antibiotics for lyme. I researched and asked the doctor if the lyme could have infected her vagus nerve. At that time she then became gluten intolerant and now suspected celiac disease.
Some of my husband’s other relatives also never fully recovered from mono and decades later seem to struggle with pain issues in particular.
How much longer is this illness going to remain the darkest mystery for families – each trying to research and make sense of this by themselves?
Hello Judy I’m very fascinated by your family experiences, some very interesting similarities to mine. My daughter with the Gastroparesis was very intrigued to hear about you daughter and how she came to have Gastroparesis and of the treatment she tried. Gastroparesis is very underdiagnosed and I often wonder how many severe ME patients are out there suffering from it without a diagnosis.
Your husband’s family immediately rang a bell for me and related to my experience. I had Glandular Fever at 10 years of age and I was never the same again. A long painful recovery then lower ability and constant episodes of ill health that impacted on my life. Perhaps it’s because of my history that my children have been so badly hit.
Pain has not been the biggest issue for my family but all the brain symptoms have been, Migraine type headaches, cognitive problems at worst inability to speak and think and Post Exertional Malaise. And still after all these years they have very limited ability. The children have been the worst affected going against the current thinking that children fare better.
And your right how long is this going to go on without proper investigation and care for those affected!
I wonder what the effect of the EBV has on gut bacteria?