The XMRV Discovery Series
Dr. Daniel Peterson, one of the researchers involved in the possibly groundbreaking XMRV findings, testified before the NIH's Chronic Fatigue Syndrome Advisory Committee Oct. 29. Among the many things he presented was an updated theory of how chronic fatigue syndrome (CFS or ME/CFS) develops. (Thanks to Dr. David S. Bell and his newsletter, Lyndonville News for putting this into language that was easier to understand!)
- You are, somehow, infected with XMRV. The retrovirus may enter your body along with another virus (basically "piggybacking"), such as Epstein-Barr or human herpesvirus 6. It could be in the blood supply. It could happen in myriad other ways -- we just don't know yet.
- XMRV infects cells involved in immunity, such as Natural Killer (NK) cells, B cells and T cells. That fits with findings of other researchers who've focused on viral/immune mechanisms for ME/CFS.
- NK cells are impaired, in both number and activity. This results in immunodeficiency and leaves the body unable to control certain infectious agents, including herpes viruses. A similar mechanism is at work in HIV, the best known retroviral disease, only involving a different type of cell.
- Other infectious agents in the body reactivate. With the suppression forces gone from the immune system, other viruses are effectively "let out of jail" and given free reign in your body. This leads to the well-documented features of ME/CFS, including increased cytokine production and activation of RNase L. This contributes to symptoms.
You can see a podcast of the entire presentation here: NIH Video Casting (scroll down until you see Chronic Fatigue Syndrome Advisory Committee Meeting, (CFSAC) - Day 1. There's also a Day 2.)
Does this model help you understand how XMRV might lead to ME/CFS? Do you think it holds together and provides a realistic mechanism? Share your opinions below!
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Dr Paterson’s explanation is quite plausible.
The recent research could be like switching on a light in a room to enable other’s to pinpoint the exact cause of CFS.
i m so desperate and full of hope/ how long will it take now to get the cure/ my life went out of control 9 years ago and i want it back!!!!!!!
thanks to all the searchers and the people who care for us
sharon
Yes, it does.
A lot of things make more sense with this retrovirus model. It is also harrowing. Part of me is praying I test negative for XMRV, but most of me knows, in my bones, that this is it.
I have suffered with this disease for 40 years, long before it was named CFS. For about 20 years, I have felt that it involved a retrovirus. The ups and downs I experienced, the response to other infections, etc. all had me telling my doctors and friends, “They will discover a retrovirus.” I also believe it will have a primary action in the nervous/immune system which will explain the neurological symptoms.
Even so, I remain somewhat cautious because I have gone through virtually every therapy readily available, e.g. I could not get immunoglobulin which helped another victim I once knew, and have watched every theory come and go.
Almost certainly, XMRV enables other viruses and or piggybacks on them.
No matter what way you cut into it XMRV is a scary bugger.
The onset of my ill health followed a tonsillectomy and acute respiratory infection, nearly 25 years ago. What has been found is a chronically low white cell/lymphocyte count indicating a viral infection somewhere. Tests revealed Varicella Zoster, the pathogen associated with Chicken Pox, Human Herpes Virus 6, associated with an early childhood infection, Streptococcal bacteria, as associated with throat infections and tooth delay, and Candida Albicans, a fungal problem in my intestines.
The common link is that before I became chronically ill, all these pathogens were already inside my body in a dormant state, and/or kept under control by my immune system. Throw in something that infects certain white blood cells, and you have a chronically activated antiviral immune response, and a stalemate condition between pathogen and immune system. Remove the Varicella Zoster infection, Human Herpes Virus 6 infection, Streptococcal infection, and Candida Albicans, as was done in my own case, and the expected recovery did not, and will not take place, because these are all a consequence of the chronic, underlying infection that the immune system cannot eliminate.
Treatment with antiviral drugs that may be found to be effective against XMRV related retrovirus could provide the answer, but I suspect that due to the nature of the infection, it will take many months of constant therapy before a meaningful conclusion can be reached.
This theory is probably the most plausible one yet…..like Carlsberg, an opinion, or marketing line.
Long term sufferers, knowing that XMRV positive is not great news, will nonetheless derive a certain amount of consolation from a proven explanation, and it is this that we hope for first. We have already suffered the consequences, and any degeneration seems to be relatively slow (compared with severe MS, say). Any cure or ameliorative treatment wil be a bonus.
Best wishes to all of you – mine’s probably not that bad really, but how does one measure it? 10% of a lot is still worthwhile most of the time.
Steve
The piggyback retrovirus theory is logical to me. I have at least 3 different viral infections that left very measurable long term illness: one of them was the swine flu from 1978, another was exposure to Gulf War syndrome with immediate drastic illness, the other was something that my doctor diagnosed as adult rubella ( I have doubts as I had three children who got this one at a time and exposed me previously.) Anyway a summer of hives rash and body swelling and poor energy. These illnesses stacked up there effects and finally after the Gulf War syndrome there were no more truly good days.
Good news is I am able to be tested for XMRV and have already had good results with the antiviral Valtrex taken for atypical shingles. I have hope for the first time in years that there is real improvement ahead rather than symptom control that pretty much does not work.