EBV in ME/CFS: Four Part Series

[Cort]

This was put up on the Phoenix Rising Website recently

EBV was the first major disappointment for CFS researchers. Several studies in late eighties suggested EBV might be the cause of CFS but subsequent studies revealed EBV activation to be no higher in CFS than controls. In recent years, however, like Lazarus rising from the grave, EBVs role in CFS has been given new life by several research groups that have continued to examined this intriguing virus in greater detail.

Check out the four part series on EBV and ME/CFS from Phoenix Rising.

• Introduction/History - EBV Rides Again?
• A Chronic Infection in ME/CFS?
• Treatment Studies, HERV's and Conclusion
• The Diagnostic Question

 

[cfs since 1998]

Check out the four part series on EBV and ME/CFS from Phoenix Rising.

Interesting series, Cort. I have a comment on this from part 2 (about rituximab):

The authors of the study postulated that reduced antibody or auto-antibody production was responsible for their improvements - suggesting that ME/CFS may have an autoimmune component.

Note that they also discussed another hypothesis, "ongoing infection with a B-lymphotropic virus". Presumably this could be EBV, or XMRV, or both. Dr. Timothy Lucketts wrote on his blog that, even though XMRV infects both B and T cells, eradicating XMRV-infected B cells could give the patient's immune system a leg up on the situation, at least until the new B cells become infected again.

 

[starryeyes]

That part about "until the B cells become infected again...."

I remember hearing about a woman with CFS who lost a lot of blood because her stomach ruptured or something from too much aspirin and she received a blood transfusion at the hospital and she felt better for about 2 weeks and then her symptoms returned.

Cort, your articles are amazing! You do us all a great service writing such well-researched and informative information. What is the date of these articles? I can't find that anywhere, if it's there can you tell me where?

I always thought there was much more to EBV in CFS. I was first Dx with chronic EBV in 1985. I am really hoping my brainfog clears up more soon so I can actually comprehend all these articles and the other information about the CAA that you gave me. I'm looking forward to more discussion here about the EBV articles.

 

[CBS]

Thanks

Cort,

Thanks for the reference to the series. I am seeing Dr. Montoya and while I have not had a chance to go over all of my recent test results, I do know that in addition to other viral infections, I have elevated EBV IgG levels. He's started me on Acyclovir for an active/chronic HSV-1 infection but this article suggests that it might also be useful to lower EBV levels. This is also encouraging as I have had significant cardiovascular issues over the last 18 months. Great post!

 

[PoetInSF]

1. EBV infection during adolescence or adulthood that leads to infectious mononucleosis is a risk factor for ME/ CFS.

This is not proven by any means. The best you can say is that IM *may* be a risk factor, as http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756827/ states. Other infections are also suspected to trigger CFS, and this paper did not compare the post-IM incidence rate with other infections. Most of the cases resolved eventually anyway.

2. An ongoing chronic and mostly undetected EBV infection causes ME/ CFS in a significant portion of patients.

This borders religion. If it is undetected, how do you know it is undetected? You could as well say unseen spirit causes CFS.

 

[kolowesi]

smoldering infections

I can't find info on the EBV test Dr. Lerner uses, but I remember the HCMV test looked for antibodies to early gene products. I think he uses an Italian test for EBV early gene products.

If a virus is making proteins but not completely replicating, you could have an infection that is not shown by ordinary antibody testing. The EBNA doesn't work because the infection moves inside the cells, so the antibodies to viral nuclear antigen subside.

It's "undetected" because the common testing is not looking for smoldering infection.

I've only begun to read Cort's work, so maybe he says this somewhere.

Mononucleosis can be caused by both EBV and CMV, FWIW.

Kelly

 

[Cort]

Thanks CFS since 1998 - I amended that passage to include that.

Hi Poet - I agree I missed something there: I altered it to

• Rates of active EBV infection are not higher in chronic fatigue syndrome (ME/CFS) patients than the population at large: EBV infection does not play a role in this disease.
  
• EBV infection during adolescence/adulthood that leads to infectious mononucleosis is a risk factor for ME/ CFS.
  
• An ongoing chronic and mostly undetected EBV infection by itself or in interaction with other viruses causes significant symptoms in a subset of patients.

Note that I said, though, that I said these are 'ideas' in the line before - not fact.

Thanks for the comments - they were very helpful

 

[jackie]

Hi Come Back Shane! I just noticed your post re: Dr. Montoya and that you had started Acyclovir.

I've been trying to find someone besides myself taking this....and now I've found you! Valcyte is common - Acyclovir...not so much, it seems.

Can I ask how you're doing on it?...and what dosage, length of time... any anecdotes on how you are feeling? (if you feel like sharing this info...if not - I understand!)

I'm just curious for anothers insight. I've been on 3200mg. for over 3.5 years. (high EBV, chronic Enteroviruses, chronic Shingles)

jackie back to bed

(BTW am I on-topic here? if not - it will be the second time today that I am - NOT!?)

 

[PoetInSF]

Note that I said, though, that I said these are 'ideas' in the line before - not fact.

OK, Cort, I missed that. I mistook those as a priori that Glaser, Learner, et al was basing their new research on.

 

[Cort]

Thanks Teejkay - Most of the articles were done quite some time ago but I tried to bring them up to date. I just posted them recently. I'll put a date on them.

 

[starryeyes]

Thanks Cort, I appreciate that.

I was also wondering if you can make it so that the font in your articles is able to be enlarged a lot without going off the page like this forum lets you do. It's hard for me to read smaller print because of CFS even though my eyesight is still good.

tee

 

[Kati]

Thanks Cort, I appreciate that.

I was also wondering if you can make it so that the font in your articles is able to be enlarged a lot without going off the page like this forum lets you do. It's hard for me to read smaller print because of CFS even though my eyesight is still good.

tee

I ageee Teejkay, the small font and not much spacing is a deterrent to reading, I had to give up, too overwhelmind for my smashed brain cells.

 

[_Kim_]

Ditto

I ageee Teejkay, the small font and not much spacing is a deterrent to reading, I had to give up, too overwhelmind for my smashed brain cells.

I tried to read it earlier today in preparation for my doctor's visit tomorrow. I was looking for a reference value for my EBV results. I wanted to know how high is a high EBV VCA AB IgG?
Mine is 4.19 (ref. range <= .90). I couldn't skim the text and got bug-eyed trying. I gave up.

 

[Khalyal]

Small font

This may help a bit... to enlarge the text, hit the control button and the + button on your computer at the same time. To reduce, hit control and -

 

[_Kim_]

This may help a bit... to enlarge the text, hit the control button and the + button on your computer at the same time. To reduce, hit control and -

Khaly, thanks for the reminder about enlarging the text. I tried it, and it does make the text larger, but then the text doesn't fit horizontally on the screen and I have to scroll left/right to read each line. Might only be a problem on a smaller screen, like the laptop I'm using.

 

[Cort]

I've wondered if its too small. I hope to make it so that you can adjust the font size easily - I have to learn how to do that. Thanks for the feedback.

 

[gracenote]

copy and paste

I sometimes copy and paste an article to Word or some other word processing program and then enlarge the font, change the font, add spacing, or whatever I need. Sometimes it is also helpful to then print it out so I can underline what I want to remember.

 

[txfriend]

Hi Kim...and Khaly

Khaly, thanks for the reminder about enlarging the text. I tried it, and it does make the text larger, but then the text doesn't fit horizontally on the screen and I have to scroll left/right to read each line. Might only be a problem on a smaller screen, like the laptop I'm using.

​

No, it's not because it's a laptop, Kim. My PC has a computer/tv
monitor, and it's 27" and I have to scroll left and right on so many
pages, it makes my dizziness even worse. I've tried Khaly's advice
using the 'control and +', but that doesn't help at all; it it still all off
the right side of the pages I read, here and everywhere else.
Makes learning and advocacy that much harder, doesn't it?

Back to the topic: of the three of us here with CFS, two have
tested positive with high EBV titers. So, does that mean the
third person may have a 'smoldering' EBV, or maybe other
viruses that are activated by something else?

 

[cfs since 1998]

Back to the topic: of the three of us here with CFS, two have tested positive with high EBV titers. So, does that mean the third person may have a 'smoldering' EBV, or maybe other
viruses that are activated by something else?

Don't forget CMV causes symptoms almost identical to EBV even in "regular people". And other herpes viruses have been implicated in CFS.

I know my condition started with an acute EBV infection but after about a year my doctor said my antibodies had normalized -- although there is debate about what normal is. I should probably have them rechecked.

 

[Cort]

I altered the print size on the research section of the website.

http://aboutmecfs.org/Rsrch/EBVPtI.aspx