i'm a little confused with all the new info on Xrmv.

i definately see that it is related to CFS, but is it thought to be a cause of Fibromyalgia too?

in the beginning of my quest to find out what was wrong with me, my titres to EBV and CMV were extremely high. my first diagnosis was chronic mono. eventually i was diagnosed with FMS though.

just curious if this may be something i should be excited about for me?

I read in one of the articles that it is a strong possibility that it is related to FM also.

If I come across the article again I'll let you know.

Sorry if this is not the proper way of answering. This is my first time.

All the best.

PoodlesMom

A small number of FM were also seen to have higher rate of XMRV than healthy controls.

But, you need to know that many people likely carry the FM diagnosis but may have CFS or both CFS and FM.

Doctors are much more apt to diagnose FM than CFS. And they both have very similar symptoms.

Tina

That's what happened in my case, as well. For years it was FM and I
was seeing DR St. Amand and Stanford. Then when I kept getting
worse my own GP started with all the tests and came up with the
Epstein Barr, Candidas Albicans, very low Natural Killer cells, etc...my
immune system is out of whack, thyroid problems, low body temp. It
keeps on and on. I know the difference in FM and CFS because I have
both. Neither one are fun at all. I wouldn't wish this on anyone.

Kathie

you should check out the Whittemore Peterson Institute's web site. I did see some info on there that they believe Fibro to also be connected to XMRV

Cindy

Sorry if this has been mentioned a lot in other threads, I haven't been on the forum for a couple years so I'm trying to catch up on all the XMRV info.

I've been diagnosed with Fibro and my GP refuses to look into anything else because I've been 'labelled' as having Fibro, but I've always thought at times my symptoms fall more in the CFS group.

Even though I fit in the Post-Traumatic Fibro sub-category (following whiplash) I still see how XMRV can play a role in how I got to this point. I had mono as a late teen, sleeping for about 3 months straight and was fatigued in general following that. Soon after I got a job working with chemicals and got lead poisoning, developing MCS. Even more tired at that time and some years later noticed mild cognitive issues that I linked to the chemical exposure. I started to have pain in my back which was diagnosed as DDD - all before I was 25 years old. Next came problems with hormones imbalance and endometriosis. I was less active than I should have been at my age (blame fatigue) but I didn't have post-exertional malaise or widespread pain at that point. Whiplash was the final straw. Following that I had all the classic fibro symptoms with widespread pain, cognitive dysfunction and definitely have post-exertional malaise.

There are times I really wondered can I have CFS if the immediate preceding event was trauma and not infection? Isn't it possible that the virus compound was there but possibly mild or able to be under control in some way? I saw Dr. Judy Mikovits speaking on Youtube about the hormone component with XMRV and how Cortisol, the stress hormone, can turn on the virus very rapidly. http://www.youtube.com/watch?v=b3OZdvSDdoA Finally everything is starting to make sense and how I see this relating to what I've experienced.

A little extra hope we can get some answers and get better.

If you google it there is some stuff on About.com that I read saying that a large percentage (90 something I think) of people with FM tested positive for the retrovirus. It also says that the retrovirus is passed in bodily fluids, like HIV, which makes me wonder, if this IS the cause how come all of our spouses and children do not have what we have?

Another thought I had was about giving blood. When I got diagnosed I was regularly giving blood but stopped even though the blood bank people said I was okay to give. Well, if no one knows what causes FM (and CFS), how do they know it is safe to give blood??

Hi lvjesus,

I think with spouses it could have something to do with hormones, since a lot of people with CFS or FM are women so men in general make up a lower portion of people with the illness. ((no offense to any guys out there - I know you get this illness too. Or to the gay community)) Even with HIV I think women are slightly less likely to pass something onto a man vs the other way around. But can spread on to their children through birth.

But even more so there is a genetic susceptibility. Not everyone is going to 'set up' to have it develop into an illness. It would be the same way that not everyone I worked with got lead poisoning or sick from chemicals but I did or how lots of people in the general population get whiplash and recover, only a select amount get FM after something like whiplash. For whatever reason (I believe genetically) I was more susceptible to those sorts of things where say my husband would not be. Even my mother didn't have the same life experiences I did, she didn't have whiplash for example but I always felt that if she did, it likely would have triggered FM too because she does have some signs of the illness to a lesser degree .....but I could be wrong.

Personally I have never found comfortable giving blood or donating organs because deep down I just had a feeling that I was contagious in some yet unknown or understood way.

Some are discouraging, strongly, us from giving blood.

The occurrence in FM patients was 12 in 20. That is a small group, but it is enough to see if more research is needed. And based on that, more research into FM patients is called for.

Mikovitz said four things could "turn on" the virus: cortisol (from stress), androgens, a virus or vaccine.

Tina

That makes perfect sense to me. There are other things that people have and they don't get the disease or whatever, but are carriers and give it to their children.

One of the effects from XMRV supposedly is reduced Natural Killer cell activity and number, which has been shown to exist in several CFS studies. However, I have yet to find a similar study in fibromyalgia. In fact, the only study that I found which tested for NK activity in fibromyalgia, found no decrease in levels compared to controls. Also, studies have shown higher levels of common viruses, i.e. HHV-6 and EBV in CFS, but few similar studies exist for fibromyalgia. Additionally, the RNASE-L antiviral function is found in CFS but not fibromyalgia. Perhaps XMRV could be a trigger for fibromyalgia (like an streeful event might be), but unlike CFS, IMHO, I don't think it the cause. But I could be wrong! :) - Mark

That makes sense (and this may be off topic) but doesn't data/results hinge on the participants being diagnosed 100% accurately for illnesses that are very difficult to diagnose? As mentioned above people do seem to be diagnosed with FM more often than CFS. Some patients appear to have both CFS and FM (by criteria standards), and then throw Lyme into the mix or when some people who have been diagnosed with FM may have treatable hormone imbalances or Hypothyroid or MPS instead. FM test studies just seem to have the potential to be a muddy pool to me.

For example, I was diagnosed with FM by 3 Rheumys and asked to participate in a drug clinical trial - I had a bad side-effect reaction so not surprisingly was not included in the study. I do have every requirement for a FM diagnosis but I fit the CDN criteria for CFS as well, yet nothing outside the parameters of FM was considered because CFS is not something Rheumys understand/diagnose. As far as hormone testing, only TSH levels were tested to rule out Hypothryroid. Luckily through pursuing my own testing of T3 and T4, I am within normal range, and I have corrected hormone imbalances with a GYN - FM symptoms still remain. I guess I would expect/hope for patients to participate in studies, more detailed testing would be done first to rule out any co-existing conditions (but that is very difficult).

...not sure if that makes any sense at all LOL ...I just think these illnesses a just rat's nest to figure it out for many reasons.

But I see what you are saying because along those lines isn't there a higher incidence of HPA dysfunction in studies of FM patients than with those with CFS?