Does EBV exclude ME?

I am really struggling to function mentally at the moment so may be asking an obvious question.
I just read on one of the boards that the NICE guidelines have EBV as an exclusionary condition.

I have no recollection of ever having EBV but have had some terrible colds with raging sore throats in the past. Part of my pattern of overdoing things involves swollen glands/ mild sore throat feeling like getting a cold but doesn't happen. These days that is usually followed the next day by muscle pain and then often a couple of days where I just can't make my body do stuff. ( I have other symptoms too)

the NHS general consultant that I saw did test for EBV and it came back positive for me having had it at some point - no idea when.

Does this mean I definitely don't have ME?

Thanks for your patience. I used to be great at getting my head round stuff like this but not anymore.

Jo

Hi Jo, nearly every adult has a positive antibody test for EBV. It excludes nothing. What NICE probably means is that if you have an active EBV infection then a diagnosis cannot be made at that point in time. If the EBV resolves, even temporarily, and you are still sick, that is entirely different.

On the other hand this is NASTY, ahhh, sorry, NICE. NICE has not and is not currently pursuing proper reviews of ME and CFS research in their guidelines. You cannot put too much faith in anything they say.

A final point. What is an exclusionary condition? If something is listed and you have it, it does not mean that ME or CFS are completely excluded. It means that, in the absence of a definitive diagnostic test, and if the exclusionary condition is sufficient to explain all symptoms, a diagnosis cannot be currently made. It does not mean you don't have ME or CFS, it means the technology is not sufficient for anybody to be sure and so a diagnosis cannot be made.

Bye, Alex

Thanks Alex that really helps.

hello mobyjoby

EBV happens to reactivate when your immune system is not working properly. (Have your adrenals and thyroid checked - Dr Holtorp)
Do have a look at the website of Dr Lerner who is specialised in EBV and CFS.

http://www.treatmentcenterforcfs.com/video/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

There are two basic titers
IgM which show antibodies if you have an active infection
IgG ... past infection (or re-activation of virus)

However, some people have low titers because their body is unable to produce antibodies.

In this link you can find some more information as well:
http://www.cdc.gov/ncidod/diseases/ebv.htm
http://www.virusys.com/epsteinbarr-virus-(ebv)/ebv-information/ebv-information/

If your EBV resolves after 5 years, in general doctors conclude you have suffered post viral syndrome.

Lyme tends to reactivate EBV so it is important to have this ruled out. (US: Igenex, Europe: Infectolab)

https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0

The NICE guidelines aren't for ME anyway. They are for a condition that they call "CFS/ME". I know that sounds like a small quibble but with so many criteria around it can be important to know what one is defining.