TBEV, could it be?

[lucy]

Before starting this thread I have searched in forum for "TBEV" with no results. So, I am assuming it has never been discussed.

The question I wanted to ask: has TBEV, the tick borne encephalitis virus, ever been considered as a source to the misery called ME/CFS?

I suppose it is not interesting to discuss the acute or death causing infections, but something like chronic TBEV infections. One important information to be known about TBEV, that it is not only tick-borne, but one can get it through non-processed cow milk.

There have been many discussions about lyme, but I got the flash of an idiot today - TBEV is never included in non-TBEV endemic regions. I have been bitten by a dozen of ticks in a endemic region in my teens.

 

[alex3619]

HI lucy, I doubt TBEV is the trigger, but it could be a trigger. On the relationship between triggers and causation we are still guessing. Many viruses cause encephalitis. I had measles encephalitis. Typically a minority of patients with encephalitis die, and a large minority have long term neurologic symptoms. After measles encephalitis up to 40% get these neurological symptoms. Any cause of encephalitis is a worry. Typical reactions involving viral encephalitis look a lot like ME, but involve far more neurological issues than typical CFS. An interesting examination of the issue could involve looking at ME and CFS prevalence in cultures that do not drink milk much - typically that would be Asia I think. I am not sure about milk drinking habits in Japan, but I doubt all their cases follow tick bite.

I was just looking at measles encephalitis, and ran some stats for the USA. At an 80% measles vaccination rate, if an epidemic broke out then maybe 108,000 cases of measles encephalitis would occur, presuming that a full 18% of the population catch measles, which is probably higher than reality even in a full epidemic. If 10% of cases go on to develop ME or CFS like syndromes, then that is 10,800 new cases in a short time. I don't know if the 10% figure is accurate - it could be more like 40% for measles, I have no way of knowing, it could also be quite rare. I really wish we had more reliable data.

Bye
Alex

 

[lucy]

Thanks for your reply, I agree, statistics reports would be different if it was the case.

In Russia there have been reports of a very slow course of the disease, with incubation time of the virus reaching years, but taking the paralytic manifestations and kolezhnikovs epilepsy (interesting thing - some people here in this community do have rythmic movements of the limbs).

Another interesting thing - in Eastern Europe, ME/CFS is sth unheard of. I look at the map of ME/CFS and wonder - is it that the patients are diagnosed differently (like for example they check TBEV immediately) or just something hasn't spread to those countries. I checked in one local forum, asking if somebody else has something similar, and no results.

I found out TBEV virus is very underresearched, main papers coming from the former-soviet union countries. Accordingly, the tests are more available in the endemic areas too.
In the end, with so little data, it is impossible to make connection, but if it was the case, Lipkin will detect the virus.

 

[alex3619]

Hi Lucy, the issue with eastern Europe could be many things. I might indicate the spread of a pathogen, possibly starting from the USA. On the other hand, it might be because most patients from these countries never get to online advocacy sites, they might not have computers, or might not read English, or as you suggest, they might not get diagnosed or have a different diagnosis. I wish we had more hard data. Bye, Alex