Detection of XMRV in Blood Cells of Sjgren's Syndrome Patients

[Jemal]

I found this through a search on the Department of Human Health and Human Services website. Unfortunately there's not much more than the title... sorry if it got anyone's hopes up or something.

440. Catherine W Cai
Detection of Xenotropic Murine Leukemia Virus-Related Virus (XMRV) in Blood Cells of Sjgren's Syndrome Patients
Emory University
Hometown: Atlanta, GA
Dr. Gabor Illei, Preceptor
Molecular Physiology and Therapeutics Branch

They are poster presentations from students (I think?).

https://www.training.nih.gov/assets/Summer_Poster_Day_Program_2011.pdf

 

[currer]

Well spotted jemal.

Having checked Wiki, it looks as though sjogrens syndrome patients often have this condition as a secondary condition to another disease like SLE or rheumatoid arthritis. They have a higher rate of non hodgkins lymphoma (5% will develop it) (sound familiar?)
The syndrome itself is a condition in which the immune system attacks the glands which produce tears and saliva.

 

[Esther12]

While I'm pretty sceptical about XMRV and CFS at this point, I have read about sjogren's being associated with CFS - but it's hard to say, as I think it's also associated with other related thing which are associated with fatigue and commonly gets diagnosed as CFS too.

 

[eric_s]

Thanks, Jemal. They seem to have experience with XMRV at Emory, so it reminds me a bit of the MSc thesis about XMRV with Silverman's name on it we saw a while ago. It seems at the moment you can only "publish" about XMRV if you are a student The entire situation is pretty strange...

 

[alex3619]

Hi, I still think XMRV is a very important topic to which we need definitive answers.

Having said that the title tells us little. They could have found none at all. Or some. Another thing we have to be careful with is over-interpreting the data. If XMRV turns out to be in the human population, then maybe 2 to 10 percent of the population carry it. So any group would be expected to have 2 to 10% XMRV prevalence. If the prevalence is much higher than this though, it might be suggestive.

I am tending toward the view at the moment that XMRV is a real human virus, infecting many sick people at higher prevalence than healthy people. My suspicion is that is not directly causal for much if anything, but that it is permissive for other things to go wrong - it distorts the immune response such that co-pathogen and autoimmune problems are amplified. This distortion is probably at its highest in tissues that are heavily infected with XMRV.

Bye
Alex

 

[heapsreal]

While I'm pretty sceptical about XMRV and CFS at this point, I have read about sjogren's being associated with CFS - but it's hard to say, as I think it's also associated with things like EDS.. which is also associated with fatigue and commonly gets diagnosed as CFS too.

hi Esther12,

theres a few people on here with EDS and also ME/cfs, im not one of them but maybe they might chyme in. Interesting link to xmrv, we have to remember the only way to cure a retrovirus is positive thinking and vigorous exercise, yeah right!!! lol.

cheers!!!

 

[Esther12]

hi Esther12,

theres a few people on here with EDS and also ME/cfs, im not one of them but maybe they might chyme in. Interesting link to xmrv, we have to remember the only way to cure a retrovirus is positive thinking and vigorous exercise, yeah right!!! lol.

cheers!!!

Yeah - I'm a bit confused about the link between the two.

 

[ukxmrv]

I'm just impressed that someone other than the WPI have worked out a XMRV test that may work

Obviously we need to see the paper when and if it is published. No problem with speculating until then on what this may mean.

 

[beike]

Very interesting. It would make a lot of sense if xmrv was related to sjogrens. My wife was tested positive for xmrv through VIPdx and has CFS/ Fibro. I have Sjogren's. Both our illnesses have developed in the last five years and we are fairly young (25 years old). Maybe She got it from me or vice versa. She developed cfs/ fibro about a month after we met.

 

[Jemal]

Very interesting. It would make a lot of sense if xmrv was related to sjogrens. My wife was tested positive for xmrv through VIPdx and has CFS/ Fibro. I have Sjogren's. Both our illnesses have developed in the last five years and we are fairly young (25 years old). Maybe She got it from me or vice versa. She developed cfs/ fibro about a month after we met.

So many young people getting these diseases and autoimmune syndromes... I feel sad for us.

 

[gregf]

Yes, interesting, thanks for the link Jemal.

I, like I think many ME patients, seem to have some Sjogrens symptoms.
It would not surprise me, if Sjrogrens is part of a spectrum of symptoms linked to human MLV infection.

 

[Esther12]

Yes, interesting, thanks for the link Jemal.

I, like I think many ME patients, seem to have some Sjogrens symptoms.
It would not surprise me, if Sjrogrens is part of a spectrum of symptoms linked to human MLV infection.

Does anyone know if Sjrogrens is on a spectrum? Or is it on/off? I know a lot of people with CFS complain of dry eyes starting when symptoms occurred. I got the impression Sjrogrens is something you either have, or not, but looking in to it now, I'm not so sure how clear cut diagnosis is.

 

[ukxmrv]

I've come across a lot of PWME also getting a specific dx of Sjrogrens.

 

[Jemal]

I have dry eyes as well. I think in Sjgren the most important symptom is having almost no saliva though? I have no problem on that front.

 

[Esther12]

I have dry eyes as well. I think in Sjgren the most important symptom is having almost no saliva though? I have no problem on that front.

I often have really thick saliva, and struggle to spit out... I try to drink loads! My eyes are fine though, and I don't think my saliva problem has ever caused trouble (eating etc is fine). I don't know how normal it is to have mild troubles of these sorts - I've never mentioned it to my doctor.

 

[ukxmrv]

I've got dry eyes and low saliva so Sjogren's was mentioned to me by a GP. I wasn't well enough to bother with an actual dx as pretty low on my health needs (trying to avoid any unnecessary hospital appointments as the necessary ones are too much)

 

[RustyJ]

Severe tooth decay, commonly reported in ME, can be caused by low saliva levels. I also have severe dry eyes, very poor teeth and believe I have a mild form of Sjogren's. No formal diagnosis and I only have intermittant dry mouth (that I am aware of).

 

[Chris]

Me too! I too have dry eyes, a slightly dry mouth, and repeated problems with eyelid glands. Oddly, this all began about 10 days after a treadmill test--despite a later diagnosed "severely stenotic aortic valve," I passed all 10 mins with a final HR of 155 (I was 71 at the time.) The presiding cardiologist proclaimed "its not your heart" ( the monitor clearly showed no signs of ischemia). The stress registered, however--the day after I had stomach acidity, and then 10 days later woke in the night with ice cold feet, a totally dry mouth, and dry eyes. The eye problem is still with me, though slowly improving (I think...). I figure that since the heart is so bound up with the ANS, the cardiac stress must have triggered a powerful ANS response, that to some degree is still with me. I went on to have heart surgery, recovered well, and then a year later began to have the symptoms that coalesced into CFS. I suspect that ANS problems are central to us though who knows what the real causes or triggers are....

I have not been diagnosed with Sjogrens--that takes a biopsy of glands in the lip, I believe; but like others here, I suspect that it is a spectrum, not a yes/no situation.
Best, Chris

 

[leela]

I dunno the relationship (if any) between Sjogren's and sicca syndrome, but maybe sicca is a precursor/mild form?
Many PwME have sicca--I dont feel like full blown sjogren's but starting this year I have very dry eyes and mouth, and my skin's gone quite dry. Definitely sicca, and though a practitioner suggested Sjogren's I dont think it fits.

My point being, I think there is a very complex immune problem in this illness, which involves multiple pathogens and environmental toxins, different for each person, such that the illness manifests slightly differently for each patient, and at different times.

This is a great find, Jemal, (wish we could read the paper) because it connects more dots to show that there is an underlying systemic immune/autoimmune situation here that can manifest according to each patient's weaknesses/exposures/environment.

 

[lucy]

My antibodies show Sjogren's, but currently I almost do not have any dryness symptoms. If my eyes are starting to feel gritty, I noticed this goes away if I sit completely straight with chin a bit down (some kind of meditation pose).
I tried to search if in sjogren's syndrome the symptoms are more expressed after-exercise, and found nothing about it. Otherwise many people have all kinds of twitches and muscle pains, cramps and peripheral nervous system problems, meanwhile fatigue is the main complaint - which is a significant overlap of symptoms with ME.
I am a bit sceptical about sjogren's diagnosis, because I think it might not be the primary cause. If the body is put under inflammatory stress(not necessarily PCR or ESR detectable stress, but let us say increased release of interleukins for a prolonged period), autoimmune conditions can develop depending on genetical predisposition.