Dr Enlander replies
I am pleased with the recent invigoration in the ME/CFS debate. What is the present state of our knowledge ?
Have we discovered the causal mechanism of the disease ? Not yet
Is XMRV / MLV related to the disease ? Judy Mikovits original paper created great excitement, it was an initial step. To confirm or deny the finding requires a double blind, split sample, multi lab independent study. As yet this has not been done either by either side.
Is XMRV / MLV a contaminent ? It is not clear that contamination is a simple explanation. The serology in the Science paper was positive, this could not be expained by lab contamination. Positive serology occurs in the patient's immune system which produces Igg antibodies against the virus. In the prostate cancer study, 4% control patients were positive, yet the latest studies did not find any positive results. This was never explained.
Conspiracy ? I am not paranoid about the publications, academic differences of opinion are not uncommon and I can accept that. In this research, there are certain curious publication timing issues and certain methodolody changes. The 120 carefully selected Canadian Concensus/ Fukuda criteria samples that were sent to London from New York were not totally tested, only 10 of the specimens were tested. Jonathan was under academic pressure and I did not press the point at that time. Dr Stoye, was a co author, but he has not responded to my email asking for information. I am not asking antagonistically what has happened to the samples. The sample personally cost me $2000 to collect and transport, no grants were available to Jonathan. All I would like to know is whether the samples were properly stored and will be tested.
I have for many years believed that ME/CFS in an immune system dysfunction. What causes the dysfunction ? We are still not sure. Perhaps a methylation cycle/ glutathione abnormality.
How do we treat it ? Various suggestions have been made . Kutapressin, Hepapressin, Ampligen, Isoprenosine, Immunoprop etc have all been proposed. There is no universal treatment, we use a kutapressin analogue, Hepapressin and Immunoprop which act on the methylation cycle.
Derek Enlander MD
New York
I am pleased with the recent invigoration in the ME/CFS debate. What is the present state of our knowledge ?
Have we discovered the causal mechanism of the disease ? Not yet
Is XMRV / MLV related to the disease ? Judy Mikovits original paper created great excitement, it was an initial step. To confirm or deny the finding requires a double blind, split sample, multi lab independent study. As yet this has not been done either by either side.
Is XMRV / MLV a contaminent ? It is not clear that contamination is a simple explanation. The serology in the Science paper was positive, this could not be expained by lab contamination. Positive serology occurs in the patient's immune system which produces Igg antibodies against the virus. In the prostate cancer study, 4% control patients were positive, yet the latest studies did not find any positive results. This was never explained.
Conspiracy ? I am not paranoid about the publications, academic differences of opinion are not uncommon and I can accept that. In this research, there are certain curious publication timing issues and certain methodolody changes. The 120 carefully selected Canadian Concensus/ Fukuda criteria samples that were sent to London from New York were not totally tested, only 10 of the specimens were tested. Jonathan was under academic pressure and I did not press the point at that time. Dr Stoye, was a co author, but he has not responded to my email asking for information. I am not asking antagonistically what has happened to the samples. The sample personally cost me $2000 to collect and transport, no grants were available to Jonathan. All I would like to know is whether the samples were properly stored and will be tested.
I have for many years believed that ME/CFS in an immune system dysfunction. What causes the dysfunction ? We are still not sure. Perhaps a methylation cycle/ glutathione abnormality.
How do we treat it ? Various suggestions have been made . Kutapressin, Hepapressin, Ampligen, Isoprenosine, Immunoprop etc have all been proposed. There is no universal treatment, we use a kutapressin analogue, Hepapressin and Immunoprop which act on the methylation cycle.
Derek Enlander MD
New York