Mycoplasma has played a role in my chronic fatigue syndrome. I tested positive for mycoplasma fermentans (incognitus strain) about six months into my illness. So when I heard that Dr. Shyh-Ching Lo MD, PhD, the discoverer of mycoplasma incognitus, would present information on the new retrovirus, XMRV, I tuned in.
Dr. Harvey Alter, MD spoke first. He is the researcher at the National Institute of Health who codiscovered hepatitis B. When I heard that he and Dr. Lo had worked together finding a retrovirus closely related to XMRV I was excited. The lecture is 122 minutes and is located at this link:
Here is what impressed me from Dr. Alter’s talk.
- Chronic Fatigue Syndrome is a very mystifying disease. If you ask a student a question he doesn’t know, the student will say,”I don’t know.” If you ask the professor such a question he will say, “The answer is not known.” Alter demonstrated professional humility.
- There is ongoing debate as to whether CFS is medical or psychological.
- We do not know if XMRV is causal.
- Feline leukemia virus and HIV are both retroviruses. They both start with infection, they both have outbreaks in communities. XMRV is closer to the feline leukemia virus and is a simple virus in the gamma retrovirus family. It is exogenous or coming from the outside, not encoded in the human genome.
- Rnase-L function is not functioning correctly in both CFS and cancer.
- CFS patients often have active herpes viruses and suppressed immune function. The onset of CFS with accute infection suggests immune deficiency.
- Mikovits et al found 67% of CFS patients were infected with XMRV. They also found antibodies to XMRV in patients. They could grow XMRV in tissue cultures, and they infected 3 chimpanzees with XMRV. Two of the chimps had an accute viral infection, while one was infected but showed no symptoms.
- Dr. Lo in 2010 analyzed blood samples from Dr. Komaroff and discovered 86% were infected with a closely related polytrophic murine leukemia virus. Controls tested positive at about 6%. This seemed to support Mikovits’ findings. [This may be the P variant many of us have who are not infected with XMRV. Only more research and testing will tell.]
- Dr. Mikovits reported at the NIH conference on XMRV that she found 48% of CFS patients were positive, contrary to the British studies of these same samples as being all negative.
- Five articles were then published suggesting all of these findings were due to contamination. At this point Dr. Alter left us on the altar waiting to see if this discovery would be sacrificed to contamination theories.
Dr. Fred Gill, MD was introduced as a doctor who specialized in treating CFS. Gill worked closely with Dr. Straus who was Dr. Gill’s mentor. Gill added little to nothing in regard to any relationship to a possible new retrovirus. He did say that until we had some link to a virus it was difficult to diagnose CFS. He claimed that connections with a diagnosis of neurally mediated hypotension did not hold up. Many patients did not have this. As to treatment he stated that only graded exercise and cognitive behavioral therapy were any help at all. He said that “adaptive pacing therapy” was not helpful. Patients needed strenuous exercise on a continual basis. This was the only thing he ever saw which helped his patients. [I tried to rationalize why this seemed to help his patients and many fibromyalgia patients. The only idea I could come up with was that exercise boosted the immune system and may help reduce viral load, if viral load is part of the disease.] He was asked if Provigil was used to treat CFS. His reply was, “Not to my knowledge.” [I had trouble taking his knowledge seriously since several CFS doctors have used Provigil for their patients. http://aboutmecfs.org/Trt/TrtProvigil.aspx%5D
When Dr. Gill concluded, the MC had a bit of trouble with his microphone and was asked, “Do you need some cognitive therapy?” As a CFS patient of fifteen years I was disgusted.
Dr. Lo stepped up to discuss XMRV. He spoke with a tone of compassion and gravity never once making light of this serious, life-shattering illness. His first comments harkened back to the mid 90s when he looked for mycoplasmas in blood samples from CFS patients and AIDS patients. He did not find a causal relationship. But in 2010 he got the CFS blood samples he had frozen in storage and studied them for XMRV. He also studied samples sent by Dr. Komaroff from patients during 2003-2006. Dr. Lo found 86-87% of these samples were positive for a polytropic murine leukemia virus, not quite the same thing as xenotropic murine retrovirus. Still patients seem to be infected with one or the other retrovirus at a much higher rate than healthy controls.
Lo suggested that we must always be concerned to rule out contamination by mouse DNA. He tested for mouse DNA genome using a sensitive assay and found no mouse DNA. “We have to develop a very sensitive assay…we chose to study mitochondial DNA…” Lo said. What he found studying mouse and human virus was “very different.” Lo was very certain their samples were not contaminated with mouse DNA.
Why are various studies not finding this retrovirus? Dr. Lo gave several posibilities and pointed out that a German study found it in respiratory secretions. Lo suggested that the patient groups may be different and preparation of samples may affect whether the virus is found. His top pick was that the PCR protocols used were different even though the scientists claimed they used the same protocols. For instance, there were variations in the number of cycles, the level of magnesium used, and the temperature of samples. Obviously there is a very low grade infection in the blood. Lo said that it was far to early to determine if it is causing disease.
The NIH sent the CDC four samples. Two of these four had been positive at the NIH lab. The CDC found all four negative. The CDC sent samples to the NIH. The NIH found only one of them positive. The Whittemore Peterson Institute have found antibodies and have cultured the virus. The Heart Lung Institute in conjunction with NIAID are working to reproduce results. Lo went into great detail explaining what might be wrong or right with various studies. Check out the link for more details.
Does this retrovirus cause disease? In an animal model the 3 chimps got infected but were not fatigued.
The later part of this conference while the audience asked questions there was a huge polar bear in the room. It was lying on its back up on the screen, chronically fatigued. I was reminded of prior conferences over the years in which CFS patients became so tired they laid on the floor along the walls or out in the hallways.
One patient who had managed to get into the conference asked about Ampligen and was told there were no studies to show it worked or didn’t work. She kept insisting there were studies, but her comments were ignored. Somewhere in my mind I seemed to recall quite a few studies of Amligen. I even found one in my files. http://www.pharmalive.com/News/index.cfm?articleid=185818&categoryid=40
When someone started discussing the use of Florinef I figured I must have gone in the wrong room. This conference was no longer about XMRV. It had evolved to tired polar bears and bad jokes. Drs Lo and Alter emitted the one ray of light in a dark hole.