No XMRV Detected in Fibromyalgia Patients

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Jan 22, 2011.

  1. karynwolfe

    karynwolfe New Member

    No Xenotropic Murine Leukemia Virus–related Virus Detected in Fibromyalgia Patients

    The complete article can be found at:

    Fibromyalgia is a multifactor condition characterized by widespread pain and diffuse tenderness. Although trauma and stress can worsen or even precipitate development of the syndrome, infections with certain viruses, including hepatitis C virus and HIV, have been associated with development of fibromyalgia (8). Nevertheless, fibromyalgia remains a disease of unknown etiology. Although CFS is a distinct entity, features shared by both diseases suggest that CFS and fibromyalgia represent the same underlying condition (9).

    Additionally, because they are often accompanied by a noticeable mental health effect (9), the presence of a potential neurotropic retroviral agent in both diseases could explain these similarities.

    Therefore, we studied the presence of XMRV and polytropic MLV–related retroviruses in a group of patients with fibromyalgia.

    During January 2010, blood samples were collected from 15 patients in whom fibromyalgia had been previously diagnosed according to American College of Rheumatology criteria ( fibromyalgia/1990_Criteria_for_Classification_Fibro.pdf ). Ten healthy blood donors served as controls.

    Using highly sensitive PCR tools and a multiple set of primers to detect xenotropic and polytropic MLV–related sequences, we found no evidence of MLV-related sequences in blood cells from fibromyalgia patients or controls. Our results agree with those from studies of CFS cohorts in Europe and North America that also failed to confirm XMRV in blood samples (3–6). Technical issues or geographic specificities probably could not account for such a difference; therefore, these negative results raise concerns about the role of XMRV in these syndromes. Nevertheless, with this relatively small population we cannot absolutely exclude an association of XMRV or polytropic MLV–related viruses with fibromyalgia. However, a proportion of fibromyalgia cases with XMRV >22% would be unlikely (3/15 cases, 95% confidence interval 0–3), which is clearly insufficient to support a significant association between XMRV and fibromyalgia.

    Fibromyalgia does not appear to be associated with XMRV or polytropic MLV–related viruses. The role of these new agents in human disease, and specifically in CFS, remains to be clearly confirmed in multicenter and standardized studies.

    All personal feelings aside: The CDC doesn't think XMRV is associated with.. anything, except prostate cancer, and can't even find XMRV in samples that are ALREADY PROVEN POSITIVE for it, so perhaps take "study" this with a grain of salt.

    That last sentence amazes me; they're just going to purposely ignore all the studies that DID find XMRV? At least the FDA & NIH found it (in their version of CFS), so I guess that's a start... Why do we even have this organization again?
  2. roge

    roge Member

    why is this not surpirsing, this is the same organization that didnt find it in me/cfs patients either so why would they find it in FM patients. im far from an expert in this area but as long as they didnt use the same technique that WPI or FDA used to detect these viruses, then i dont place any weight on this study, not to mention it was very very small at 15 people. cmon CDC, if you are going to do a study on something as important as a new retrovirus, then surely you can use at least 100 patients in the study which just shows to me they dont view it as important and was just wanted to get another bogus study out there saying XMRV is not associated with either me/cfs or fm.


  3. gapsych

    gapsych New Member

    I think science is trying to sort this out.

    I don't think the CDC has ruled out an association. But it also hasn't been proven.

    Science can't move forward when people start judging the merits of a study because we don't like the results. That's not how science works.

    Maybe this was a pilot study? Maybe funding was not adequate?

    Science is what will find the truth, whatever it is. But it's too soon to tell.

    I know it's frustrating but this is the reality at this point in time.


    The authors of this study do say that it is a small sample and further testing is needed.

    If the CDC can't find XMRV it might be the methodology or maybe it just isn't there or present but not in measurable amounts. As far as I am aware the CDC is also saying the same thing about Prostate Cancer. There are differing results and hopefully this will be sorted out.

    [This Message was Edited on 01/22/2011]
  4. gapsych

    gapsych New Member

    OMG, a letter to the editor. How funny. Definitely not a study and definitely worth it to do your homework. Thanks for this information.

    I also believe FM and CFS are different conditions.

    However, from reading the original post I don't see how you can interpret that they are implying that it is not present in CFS.

    Was there something that was written in the "study" that is not in the original post? Maybe that is where you get the idea they are saying, if it isn't in FM then it isn't in CFS?



    I just read the study and I think it says To The Editor as it looks like it is part of a proposal for grant money to do further testing.[This Message was Edited on 01/22/2011]
  5. gapsych

    gapsych New Member

    It was right in front of me!! Not the first time this has happened.

    It does seem strange that they lump CFS and FM. Now I want to go back and see how many other studies did this.

    All that they can technically say is that they did not find XMRV in the FM patients they tested and you are right it doesn't really have anything to do with the negative or positive CFS studies unless they're thinking is if XMRV does pan out and this might be a way to separate the two conditions. But they don't state that.

    I think science needs to focus on establishing a test that is reliable or we will just keep getting the same mixed results.

    I guess time will tell, but it's certainly be frustrating at times.

    Take care.

  6. IanH

    IanH Active Member

    This is not good science, not because of the co-identity of FMs and CFS but because there is no clear case definition of FM. Equally the case definition of CFS is poor too as most studies still insist on using the fukuda criteria. (recently a Scottish study found that around 40% of people in Britain dx CFS were not CFS if you applied the proper criteria). Even if the underlying morbidity of FM and CFS are different you would still expect to pick up a proportion of people with dx FM as having CFS. (60%+ of people with a CFS dx have FM and around 60% of people dx FM fit the criteria for CFS.

    I never believe the results of any study on FM,CFS or MCS unless they specify very very clearly what case definition was applied. Right now all research into these illnesses is a diagnostic nightmare. FM more so than CFS. The Rheumatologists I work with are currently involved in a complete shuffle, one of them admitting "we don't know where we are with FM" -I agree.
  7. gapsych

    gapsych New Member

    Absolutely and this, in my opinion is is related to why scientist are getting different results when studying XMRV.

    There's also the controversy about whether CFS is the same as ME.

    That along with a test for the detection of XMRV, if it is indeed not a contaminant, would make a lot of the science surrounding FM and CFS a bit more credible.

    It all muddies any studies on FM/CFS even if they aren't about XMRV.

  8. karynwolfe

    karynwolfe New Member

    Such interesting conversations, here! :) So much that I agree with.

    And for the record, the CDC differtiates between CFS and M.E., as well.

    "Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

    The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

    Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

    However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." -- Centers for Disease Control and Prevention

    (ETA source: )[This Message was Edited on 01/24/2011]
  9. IanH

    IanH Active Member

    The CDC are totally confused over these symptoms and labels.

    1. There are no objective signs that distinguish these conditions
    2. All biochemical and radiological data apply to all three conditions (The degree of which varies depending on which study/laboratory produced the data
    3. Some attempts have been made to distinguish them, eg.
    "Characteristic Features of Dysautonomia distinguishing CFS from FM - one clinics experience"
    Naschitz JE, and Itzhak Rosner. Technion-Isreal Institute of Technology, 2010

    They measured the HIS (haemodynamic instability score) between CFS and FM patients and got a significant difference. All well and good but what does this mean? HIS scores select a couple of autonomic variables, BP and HR as a result of the tilt test. I questioned the selection process for the patients, there was none. Selection was based on clinicians diagnosis. So this is not research of any value. I have also seen unpubished studies where the tilt -BP/HR changes in FM patients were the same as what was seen in CFS patients in this study.

    I am yet to see a study which can distinguish these conditions objectively.
    There must be a differences between people who have predominance of pain compared to people who have a predominance of fatigue in response to exercise without pain but I doubt that difference is a disease distinguishing factor - rather it may be a genetic or past history factor. Nobody can clarify this. Jonathan Kerr, Of Imperial College London has shown that there are some clear SNPs(Single Nucletide Polymorphisms - basically mutations) found in both FM and ME/CFS people. They have not yet been able to distinguish them.

    As for ME, just another old label-no difference from CFS (ME/CFS) In some ways a better name

    XMRV looks like another pathogen, whos presence is setting up a dysfunctional immune response. In the past, associations have been seen with HHV6, HHV7, CMV and PV-B19 and of course HERV-K18. Enteric bacteria are also associated with these illnesses (FM and CFS). Some say these are upregulated because the immune system is dysfunctional. Possibly but the alternative is that in some people they can all be a cause of a dysfunctional immune system if present chronically.
    Then there are the people with MCS, whos immune parameters look like those of CFS but who don't necessarily have the fatigue or pain. In my following of people with this over about 7 years I have seen some of them develop fatigue and pain. In other words as their illness progressed some became more like CFS or FM. Their main problem is symptoms in response to chemical exposure.

    Some immunologists currently show evidence that the immune system is responsible for the early detection of "toxins" through our respiratory and digestive systems and that the symptoms of such detection are those that a person with CFS experience. It has been estimated by some researchers that upto 40% of people dx with CFS and with FM experience MCS. I have talked with patients like this. (I am not a clinician but I do get to talk with patients diagnosed with all three "illnesses").

    [This Message was Edited on 01/25/2011]
  10. IanH

    IanH Active Member

    This can only lead to a new name of the illness or illness group (Karyn's disease)
  11. IanH

    IanH Active Member

    Thank you Jam338 Very helpful.
  12. karynwolfe

    karynwolfe New Member

    IanH, you cracked me up with the "Karyn's Disease!" LOL

    Then ten years from that, people can come yell at me for messing it up. Because it would only be appropriate! ;)

    I also hope we'll have a new name in the future. Anything to get away from the CDC's definition of "we dont' know what you have so you go in this category"

    JAM, interesting connections between XMRV and Lyme. I found it very intriguing when they compared XMRV and Lyme, to HIV and it's coinfections, especially since I had M.E. several years before contracting Lyme disease. I'm one of those classic M.E. cases and really want to know if I'm soon as they develop an accurate test. I always thought it played a role in my subsequent infections going chronic. I mean, if it took me two months to even fight off a regular cold..........
  13. gapsych

    gapsych New Member

    Were the patients diagnosed with Lyme according to CDC definition?

    If it isn't by the CDC definition the results could be muddied.

    Just asking.

  14. karynwolfe

    karynwolfe New Member

    Sorry gapsych I can't figure out what it is you're asking me about :(
  15. gapsych

    gapsych New Member

    I am trying to figure out if the Lyme patients who tested positive for XMRV were also CDC positive according to the CDC criteria, diagnosed by an LLMD or both populations included. If they aren't CDC positive, then maybe there are people who don't really have Lyme but CFS/ME. It could also work the other way around where some of the population studied don't have CFS/ME but Lyme.

    I will also look for this info. I think it is important to define what Lyme is in these studies as well as what CFS/ME is.

    If someone could point me towards the original study, I would appreciate it.

    I am not talking about the issue of what is the correct definition of Lyme but curious about the definitions they used for both the CFS and Lyme cohorts.

    This is all so complicated isn't it?

    Take care. :>)

    [This Message was Edited on 01/30/2011]
  16. karynwolfe

    karynwolfe New Member

    Just posting to let everyone know I"m doing very poorly cognitively and can't follow/understand this thread anymore. Hope others can figure it out and that it might prove useful to some.

    Take care

  17. gapsych

    gapsych New Member

    Interesting. Some scientiest are speculating that chronic lyme disease may actually be XMRV if long term antibiotics are not effective.

    Emphasis is on speculation.

    Take care.

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