XMRV: Necessary but not sufficient?

Discussion in 'Fibromyalgia Main Forum' started by richvank, Nov 12, 2009.

  1. richvank

    richvank New Member

    Hi, all.

    It seems to me that the information currently available on XMRV suggests that it is necessary, but not sufficient, for a person to be infected with XMRV in order to develop ME/CFS.

    I say "necessary" because nearly all the people who had ME/CFS were found to have this infection.

    I say "not sufficient" because a significant percentage of the healthy controls from the general population were also infected, but had not developed ME/CFS (at least not yet!).

    I think that the only way we can interpret this combination of observations is to say that XMRV is "necessary but not sufficient."

    If XMRV infection is not sufficient alone to produce a case if ME/CFS, what else would be needed? I don't think that's known yet. It could be that other infections are needed, or it could be that the immune system must be compromised.

    As far as I can tell, the latter would be compatible with the GD-MCB hypothesis, which proposes that a variety of stressors (physical, chemical, biological and/or psychological/emotional) raise cortisol and epinephrine and place demands on glutathione, tending to lower it, before the onset of ME/CFS.

    Lowering glutathione produces oxidative stress, and the virus apparently needs oxidizing conditions to form disulfide bonds in its protein coat.

    Raising cortisol and depleting glutathione both tend to suppress the cell-mediated immune response, which is needed to combat viral infections.

    There also seems to be information suggesting that raising cortisol stimulates the virus.

    So it would seem that all of this would fit together well, and it would also agree with the histories of many PWCs, who report that they experienced severe stress of one kind or another before the onset of their illness. There has to be a way to bring together these various histories with the common factor of the presence of XMRV infection, and I think this model does that.

    [This Message was Edited on 11/12/2009]
  2. AuntTammie

    AuntTammie New Member

    What you wrote certainly makes sense to me. Thanks
  3. gapsych

    gapsych New Member

    Makes sense to me, too.

    But technically would it be necessary in all cases such since there are some people who have CFS and not the virus or have the virus but are asymptomatic? Are we even that far along to know?

    I can't remember if something is necessary, it has to be in all cases or not. Brings back memories of my college days!!



    [This Message was Edited on 11/12/2009]
  4. richvank

    richvank New Member

    Hi, gap.

    In pure logic, what you say is true. In experimental science, however, there is always a degree of uncertainty in the measurements. So if one gets a value of 95% for the percentage of PWCs who have the virus, it may indeed actually be 100%, because of the uncertainty in the measurements. That is the grounds on which I am suggesting that the virus is necessary.

    On the other side, the fact that a significant number of people were found to have the virus but are asymptomatic is exactly why I suggest that having the virus is not sufficient. I don't think it's likely that the 3.7% is really zero, i.e. that these were all false positives.

    Concerning whether we are far enough along to know, please note that I qualified my suggesting by saying that "the information currently available" suggests this.

    Best regards,


  5. wendysj

    wendysj New Member

    Hi Richvank,

    I have two questions... Does Epstein Barr have anything to do with this? And I think we all need to remember that there is a possibility that some people who "think" they have CFS, may actually be sick with something else or just plain faking it. (There are always bad people within a group... IMHO.)

    I have learned so much from you... Keep up the good work!

  6. richvank

    richvank New Member

    Hi, Wendysj.

    I don't think we know yet whether or how Epstein-Barr virus figures into the picture of CFS. It's a fact that many people with CFS have antibodies against EBV, and there are others who do not. The same is true of several other infectious agents, both viruses and intracellular bacteria.
    The majority of the general population has EBV antibodies. And I think the same is true of some of the others. Maybe some of them act together.

    There is always the possibility of misdiagnosis, as you suggest, and that will add uncertainty to a study as well. My understanding is that in the recently published XMRV study, samples were solicited from physicians specializing in CFS, and severely ill patients were studied, so that should have minimized this uncertainty, but yes, it is always there. Personally, I don't suspect that "fakers" would have been a big contributor to the uncertainty, given the way the patients were selected, but it's hard to rule that out completely.

    Best regards,


  7. TigerLilea

    TigerLilea Active Member

    Hi Rich - Do you think that all subsets of people with CFS will turn out to have XMRV, or is it possible that it will only show up in one or two groups? Right now they have only looked at the severely ill patients; could it be that people who aren't as sick and aren't bed bound might possibly not have XMRV?
  8. richvank

    richvank New Member

    Hi, TigerLilea.

    I think that's possible. There's still a lot we don't know. Albert Donnay has raised this same issue in another group. If it turns out that way, I will revise my suggestion! :)-)


  9. TigerLilea

    TigerLilea Active Member

    Thanks, Rich!
  10. gb66

    gb66 Well-Known Member

    I remember reading this about other infections also. I had mono years ago but I have heard that about 95% of the population carry the EB virus but not all developed mono. Is this the same thing? Does anyone know why some develop mono and others don't?
  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Rich, I think you are on the right track.

    I think Dr. Mikovitz stated that in follow ups they noticed that androgens (particularly progesterone), cortisol (bringing in the stress factor) and a virus can "turn on" the virus. This explains why CFS is more common in perimenopausal women and teenage / young adult women.

    And, as you said, it explains why many of us were under some sort of stress when we got it. But others say they had the flu or mono and it developed into CFS.

    So unless Dr. Mikovitz misspoke, at least from their perspective, that would be the explanation of why 95% of people with CFS have the virus and only 3.5% of healthy. And it explains why the healthys are.... well... healthy.

    I appreciate your mentioning that they chose the severely ill. Follow me on this theory.

    Could it be that we have XMRV or we catch it, and get bad ill. The virus causes a downward spiral to a physical abyss and becomes a loop. We can't get ourselves out of it because some of the abnormalities are interrelated. As one starts to recover, another part damaged suppresses the recovery. Then that causes another abnormality or keeps another abnormality from being able to recover.

    Now, this being the theory (mine, not anyone else's), could it be some are able to climb out of it, somewhat. Possibly if they are younger, or stop activity and rest earlier in their illness or have a genetically strong immune system and central nervous system, whatever.

    Could the person's immune system be able to get control of the XMRV, but the person still have some symptoms because of the loop of abnormality in interdependent systems? In that case, they may not be as severely ill as someone who has the XMRV in an active infection.

    But they still have problems. And the XMRV can be turned on again, causing a crash.

    Just a theory.


  12. mbofov

    mbofov Active Member

    It all makes sense, Rich. One thing that had puzzled me was that many people who became ill were runners or just very physically active. I had presumed these people would be extra healthy (like the meter reader in Incline Village who walked 20 some miles a day). Well, very intense physical activity can actually raise cortisol levels. I did have severe stress (of another kind) before getting sick.

    I may have been exposed to XMRV in Tahoe in 1984 or 1985 while on vacation, but of course need to have the blood test done.

    More pieces of the puzzle! I am still plugging away (no other word for it!) on the methylation protocol. I do tolerate the supps better now, though they still cause detox, but it's easier to take.

    Thanks for all your input!


    btw, I can't imagine anyone wanting to fake this illness. Who fakes diabetes or AIDS or anything?
  13. victoria

    victoria New Member

    I think there will be found a genetic susceptibility bottom-line - maybe this will depend on in what order one gets various infections?

    I had a year-long bout with 'EBV' but now think it was probably CMV (wonder if the same tests exist for active CMV now.) Back then the tests didn't distinguish between CMV or EBV.

    Since then, the only difference I've read was that, with EBV you got a sore throat/tonsilitis, and with CMV it was tonsilitis but NOT sore - that was me, didn't go to the infirmary until I couldn't swallow any food! I've never tested positive on an EBV test since then, of any kind.

    I've not spent the money on a WB, but ran across an old test from 2001 that showed I had antibodies for lyme... given my response on the MP (herxes), I don't doubt that I have "it+" - especially since my son had all my symptoms plus more (extensive pain & weight loss, lowered heart rate.) So, in some ways we responded differently, he lost weight even tho inactive, I've gained weight being inactive; I got chronic sinusitis now getting better on the MP while he had the horrible pain. He also did not show antibodies to, or active EBV infection, one of the 'regular' tests his internist initially ran on him, or for anything else (all results were scarily 'normal').

    Having seen the difference between us (my original dx: CFIDS) ... it will be interesting to see how it works out. Depending on what happens next with it all regarding research, we'll probably get tested for XMRV.

    all the best,

  14. wendysj

    wendysj New Member

    Hi Rachvank,

    Thank you for your response. I have one more question.

    When I first got sick. It was mono and EBV detected right away. The most important thing is that I was severly ill for a little over a year. After that first (God-awful) bout with this, it has never come back THAT bad for THAT long. I still have "severe fatigue" weeks at a time but it lets up a little until the next time... could be weeks before the next time.

    My question.... Is this pretty much the same for everyone. We are almost bed-bound for the first year or so and then it lets up some?

    Thanks again for your help.
  15. victoria

    victoria New Member

    I had active mono as I said for a year... struggled with 1/2 load of classes. No one ever talked to me about pacing back then - so I kept relapsing everytime I tried to go live a 'normal' life.

    I could always recover after 6 months to a year of 1/2 time activities... the best I've ever felt was while pregnant & nursing (TG!). It wasn't till the 1990s when I went thru major stressor after major stressor for 2 years that I started a slow but sure downslide.

    So I would say yes.... and while you're feeling good, don't overdo it even tho you can do it for a while. It will almost always come back to haunt you.

    all the best,

  16. richvank

    richvank New Member

    Hi Wendysj.

    The course of the illness in CFS seems to vary quite a bit from one person to another. I don't think I can say that there is a single pattern that it follows. Some people are able to keep working full time after their onset, though that often turns out to be a bad choice. Some people are bed-bound for years. I've heard of just about everything in between.

    Dr. Cheney has spoken several times about stages in CFS that he has observed. In his third stage, the person doesn't have such severe symptoms, but they do have serious limitations.

  17. richvank

    richvank New Member

    Hi, fredt.

    I've heard from many people who are in that boat, too. As you know, Lyme disease is not easy to diagnose unequivocably, and many misdiagnoses have been made.

    My view on the relationship between Lyme disease and CFS is that they are distinct disorders, but that the same person can have both.

    I think it's possible for a person who has the genetic predisposition to develop a partial methylation cycle block to initially contract Lyme disease, and then move into this block, so that they have CFS, also. In those cases, I think that both need to be treated in order for a recovery to take place.

    I think there are also people who do not have this genetic predisposition, and when they contract Lyme disease, they don't have CFS per se with it, but many of the symptoms are similar. If antibiotics knock out the bacteria, these people recover from this alone.

    I think that there are also people who develop CFS initially, perhaps from a variety of causes, and perhaps XMRV is a necessary part of the causes, and then these people go on to contract Lyme disease, either from a new tick bite, or perhaps it was latent in their bodies and when their immune response was suppressed as part of CFS, the Lyme disease flared. Again, I think both must be treated in these people.

    There are also people who have CFS, but never contract Lyme disease.

    Best regards,

  18. richvank

    richvank New Member

    Hi gb66.

    As I understand it, some people are exposed to EBV early in their lives, and they don't have symptoms that are recognizable as mononucleosis. People who are exposed as teenagers or later tend to develop the symptoms. I don't know why.

  19. richvank

    richvank New Member

    Hi, Tina.

    Thanks for sharing your theory.

    I do agree that something of this sort probably happens. Viruses have ways of suppressing the immune system, and there can be interactions and vicious circle mechanisms. Age and genomics likely do influence how a person's body responds. And viruses do stay in the body in the latent state, waiting for another opportunity to flare up.

  20. richvank

    richvank New Member

    Hi, LonelyHearts.

    I think you made some good points about the intricacies of testing and diagnosing these viruses and about possible interactions between viruses.

    If the HPA axis is operating normally, an infection would cause the cortisol level to rise somewhat. If the HPA axis becomes blunted, as is observed in CFS, the cortisol level tends to stay low, and does not respond normally to stressors such as infections.