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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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XMRV - The Puppet Master?

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 15, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    From the Phoenix Rising website XMRV - Puppet Master?
    by Cort


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

    The idea that XMRV could be a kind of ‘puppet master’ (eg. Dr. Bell) that allows other infections such as EBV or HHV6 or Lyme or enterovirus to become exacerbated is generating discussion. Dr. Coffin suggested such in his article “A New Virus For Old Diseases”. Dr. Huber, a researcher studying endogenous viral elements in ME/CFS has suggested that XMRV might be able to unlock endogenous retroviral elements in our DNA. Based on the limited results from his clinic Dr. Cheney speculated XMRV could be a factor in autism and ADHD and (wondered about arthrits, asthma and cancer). Dr. Mikovits has reported that XMRV can be found in autism and ‘atypical MS’ patients. Its all a bit overwhelming.

    Autism - The Nevada Autism Commission revealed that 40% of a ’small group of children’ with autism tested postive for XMRV. Dr. Mikovits verified this stating ” we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism” but that at best it would be one several factor that contributed to the disorder. Dr. Mikovits also speculated that the virus could be a factor in vaccination triggered autism (see below).

    Infectious mononucleosis - No one’s mentioned a key factor in many patients journey - infectious mononucleosis. Could an XMRV infection be a risk factor for getting infectious mononucleosis; ie. do people who get the more severe form of Epstein-Barr virus infection (infectious mononucleosis) rather than the less severe form (mild cold) tend to carry the XMRV virus?

    The Dubbo and Taylor studies could show that XMRV is not restricted to the ME/CFS patients. It turns out that if you have infectious mononucleosis you also have an increased risk of coming down with multiple sclerosis and the WPI has already reported finding XMRV in ‘atypical’ MS patients. Could the scenario go :-XMRV infection in childhood = increased risk of infectious mononucleosis = increased risk of ME/CFS or multiple sclerosis.

    Other Diseases - ME/CFS is not the only disease with disabling fatigue, cognition problems, sleep problems, etc. Besides related diseases like fibromyalgia there are also a number of diseases which don’t appear to be related to chronic fatigue syndrome at all but which have subsets of patients who look very much like chronic fatigue syndrome patients. A significant subset of post-cancer patients, post ICU patients, post heart surgery patients, patients with liver disease and multiple sclerosis patients have a very CFS-like condition. Researchers have speculated that they are in fact chronic fatigue syndrome showing up in other diseases.

    Stress! What these conditions share is a stress trigger; whether it comes in the form of an infection, a physical trauma ( fibromyalgia), cancer treatment, surgery, etc. This, of course that the stress response plays a critical role in the development of this illness.

    Note that this does not at all conflict with any of the statements that Dr. Mikovits has made regarding possible triggers for XMRV activation; two of them she mentioned - cortisol and inflammatory cytokine levels - are increased during the stress response. Could the CFS-like post-cancer, post-ICU, MS patients, etc. patients be harboring the XMRV virus? The possibilites for this virus - at this very early stage when we don’t know much - appear to go on and on.

    Why might retroviruses at least theoretically be able to trigger so much disturbance? Because we’re pretty much stuck with them; instead of eventually getting killed off in the body like other viruses they tend to linger in the body - i.e. they are chronic - and they can be pretty good (eg HIV) at creating a condition which other pathogens can take advantage of. Let’s not forget , though, that most retroviruses are completely harmless. In fact our DNA is studded with the remnants of old retroviruses that have embedded themselves in our genome.

    Dissenting Views - There is also some reason to believe that this virus might not be some sort of ‘Puppet Master’ that turns on a ‘viral cascade’ in patients. A study by Dr. Nicholson found tthat one virus does not appear to open the door to another virus in ME/CFS patients. Instead ME/CFS patients as a group tend to have one or another opportunistic virus. Dr. Natelson reports finding very, very few viruses in the patients that he sees.

    Reports from the WPI, on the other hand, mention finding dozens of different types of viral fragments in the sophisticated tests in chronic fatigue syndrome patients and very few in controls. Is technology the difference here? Or are these physicians looking at different types of patients. Clearly we’re still in the early stages of getting a clear picture of the viral component in this disorder.


    http://aboutmecfs.org/Rsrch/XMRVPuppetMaster.aspx
  2. shrewsbury

    shrewsbury member

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    great article Cort - and the info on possible triggers that follows this on Phoenix Rising. I don't have scientific training so get overwhelmed at times with all the inf0 - you have a knack of making it easier to digest and be less intimidating. 2 things jumped out at me -

    1st is the idea that stress is a shared factor in all hypothesized triggers and also in the development of ME/CFS. THis makes so much intuitive sense to me. Am setting myself the task of trying to understand cytokines and TH1 and TH2 over the next while. Do you know of any good resources to do this? I don't have access to all the testing and drugs I've been reading about but I've been self-medicating with turmeric (curcumin) and cayenne for almost a year, hoping to reduce inflammation. Hard to be sure of anything with a trial of one, but temperature doesn't fluctuate as much, heat intolerance reduced, night and day sweats reduced and can stand up for a bit longer.

    2nd is the trial patient group. Think that's going to be key in the immediate future - an agreed upon definition of the illness and severity, and perhaps sub-groups, is going to have to be reached to be able to compare results.
  3. myco

    myco Guest

    I don't see how this holds water. How do you explain all of the patients who were diagnosed with CFS, then later with Lyme and co-infections, who got better with antibiotics and are now living their lives? This would only make sense if the retrovirus itself was harmless and did not cause symptoms.

    All I can say is that my CD-57 and other immune markers, were abysmal before I was treated with antibiotics and now they are normal. So are many other patients I know.
  4. Advocate

    Advocate Senior Member

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    Hi Myco,

    You wrote, "How do you explain all of the patients who were diagnosed with CFS, then later with Lyme and co-infections, who got better with antibiotics and are now living their lives?"

    How do you explain the all of the patients who were diagnosed with CFS, then later with Lyme and co-infections, who did NOT get better and are now bedridden? How do you explain these patients who had state-of-the-art high-dose cocktails of antibiotics monitored by careful LLMDs, but ended up much worse after treatment for a couple of years?

    Maybe the first group doesn't have an XMRV infection and maybe the second group does. Maybe an XMRV infection can so weaken the immune system that antibiotics are not effective.

    You don't hear much from the second group on Lyme lists. They are too sick to post, too sick to go to the doctor, too sick to cook for themselves. Maybe, just maybe, research into XMRV will turn out to help them.
  5. myco

    myco Guest

    I can explain that many patients confuse herx with getting worse and abandon treatment. You can solve this problem by taking "binders" like cholestrymine to get the toxins out of your system. Porphyria is a big problem and needs to be addressed.

    You can find many on cpnhelp.org who had to follow a combined protocol while herxing for years before they got well. I know many of them.

    I have talked extensively with my LLMD about this and the patients who commit to the treatment and follow his treatment to a T largely get well. Largely meaning in the 85% range. I'll go with those numbers.
  6. Koan

    Koan Be the change.

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    Myco,

    Wouldn't it be explained by the fact that the people you're talking about have Lyme disease and not ME or are not part of the CFS subset with ME?

    Surely it is not the case that everyone with every illness actually has Lyme disease. That simply is not credible.

    I don't have Lyme disease but I do improve on tetracyclines. I do have simmering bacterial infections which I cannot seem to get completely under control without abx. In addition, tetracyclines have other immune modulating effects.

    I am reminded of the dove/pigeon analogy. All doves are pigeons but all pigeons are not doves. Or is it the other way 'round?

    Koan
  7. InvertedTree

    InvertedTree Senior Member

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    I was going to make this very point. Well said.
  8. Cort

    Cort Phoenix Rising Founder

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    The more I think about it the more I think what a mixed up group we are. I, except for some stomach bugs appear to be pathogen free (altho I'd love to take the WPI's pathogen test - going to be out in a few months).

    There are people with EBV with Lyme, people just with EBV, people without EBV and to ditto with the other viruses. Could we all have XMRV? (wouldn't that be great?).

    Some people do get well. Dr. Lerner has people get well on his antivirals. Dr. Chia gets some people well on oxymatrine. Some people do it very long-term antibiotics. Of course all of these well people probably make up a pretty small (very small) subset of patients. So much left to learn.

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