Hi, all.
I attended this talk, but haven't been able to report on it until today, because I've been at the Orthomolecular Health Medicine conference over the weekend.
I arrived late at the talk because of the difficult traffic and parking situation at Stanford. I think there must have been an athletic event going on.
There were approximately 100 people present for the talk and it was being videoed. I understand that the video will be available on youtube in a few weeks.
When I arrived, Dr. Montoya was outlining the symptoms of CFS and its diagnosis.
Dr. Montoya is clearly a compassionate man, and is committed to making progress in the understanding of the involvement of infectious pathogens in ME/CFS. I had heard him speak in the past at an IACFS/ME conference, and had met him personally a few years ago at the Ratna Ling working group seminar on CFS. He has been working for some time to put together a research program at Stanford.
He described his own history with treating and studying this disorder. He is a specialist in infectious diseases, and his former experience was with toxoplasmosis. He got involved with CFS when an international patient came to Stanford for help and was referrred to him. She had very swollen lymph nodes and other symptoms of viral infection. He decided to treat her with an antiviral, and this turned out to be effective. Shortly after this, two more patients came to him with similar situations, and again he treated with antivirals successfully. This led to his published pilot study, and later, a larger study funded by Roche, using valgancyclovir (Valcyte). The pilot study also showed positive results. In the larger study, he focused on patients with a viral-type onset of CFS, and who had high titers for antibodies to EBV and HHV-6.
I had not heard details of the results of the larger study until this talk. He reported in the talk that they did find statistically significant improvement in some of the parameters they measured, involving fatigue and cognitive function, but I can't remember the specific test panels they used.
He showed the plots of the data, and there appeared to me to be quite a bit of "zigzagging" of the measured parameters as a function of time, as well as considerable overlap between the plots for the antiviral-treated patients and the controls. While comparison of slopes reportedly showed statistically significant differences between the two groups, I would not say that the differences "jumped right out" when I looked at the raw data. One issue was that the two groups, though composed of randomly assigned individuals, had fairly different average initial values for the measured parameters. So the final actual average values of these parameters did not come out very different between the treated and untreated group in at least one plot. Perhaps the differences would have been more striking if the number of patients had been larger, so that the average initial values of the parameters for the two groups would have been more nearly the same. This, of course, is limited by funding. I suspect that the reason these results have not been publicized much, though the study was done quite a while ago, is that they didn't show very striking differences. Hopefully this study can be followed by a larger one with a more focused subset of patients, and the results will be more clearcut.
Dr. Montoya plans to continue his study of viral involvement in CFS and has the funding (from several sources) to do so, as well as having established collaboration with other researchers at Stanford and elsewhere.
One point he made is that it appears that it is necessary to treat with an antiviral for a longer time than was done in earlier studies by others, which did not show positive results. One concern is whether there are serious side effects of longer term use of these drugs. Valcyte has been found to produce cancer in animals after long-term use. This has not been found in humans, but is a concern, and Dr. Montoya emphasized that the people in his studies are made aware of this as part of the required informed consent.
On XMRV, he reviewed the published papers, and concluded that the issue is not settled yet as to whether XMRV is associated with CFS or not. He will be participating in the NIH-sponsored study led by Dr. Ian Lipkin from Columbia University to try to resolve this issue. I asked him if he is currently testing patients for XMRV, and he replied that he has asked researchers from another department at Stanford to develop a test for XMRV, and they are working on it.
He emphasized that there appear to be subsets within the CFS population, and that there are elevated titers of antibodies to a variety of pathogens present in various patients. In addition to antibodies, his group is also measuring a variety of other parameters, including some cytokines.
On the PACE trial, he emphasized that cognitive behavioral therapy and graded exercise therapy should not be viewed as cures for CFS, and he showed quotations from the published study that showed that they really did not help very much.
Someone from the audience asked what the current waiting time is to get an appointment to see Dr. Montoya personally, and the answer from his staff was that it is running between two and three years at present. Dr. Montoya noted that his colleague, Dr. Andreas Kogelnik, is also seeing patients, however.
Those are the main things I can remember, and I recommend that people look for the video on youtube a few weeks from now to find out more.
Overall, I think that it is very significant that Dr. Montoya has been able to get a research program started at Stanford that is looking at infectious pathogens in connection with CFS and other chronic illnesses. I shook his hand after the talk and encouraged him to keep up the good work!
Best regards,
Rich
I attended this talk, but haven't been able to report on it until today, because I've been at the Orthomolecular Health Medicine conference over the weekend.
I arrived late at the talk because of the difficult traffic and parking situation at Stanford. I think there must have been an athletic event going on.
There were approximately 100 people present for the talk and it was being videoed. I understand that the video will be available on youtube in a few weeks.
When I arrived, Dr. Montoya was outlining the symptoms of CFS and its diagnosis.
Dr. Montoya is clearly a compassionate man, and is committed to making progress in the understanding of the involvement of infectious pathogens in ME/CFS. I had heard him speak in the past at an IACFS/ME conference, and had met him personally a few years ago at the Ratna Ling working group seminar on CFS. He has been working for some time to put together a research program at Stanford.
He described his own history with treating and studying this disorder. He is a specialist in infectious diseases, and his former experience was with toxoplasmosis. He got involved with CFS when an international patient came to Stanford for help and was referrred to him. She had very swollen lymph nodes and other symptoms of viral infection. He decided to treat her with an antiviral, and this turned out to be effective. Shortly after this, two more patients came to him with similar situations, and again he treated with antivirals successfully. This led to his published pilot study, and later, a larger study funded by Roche, using valgancyclovir (Valcyte). The pilot study also showed positive results. In the larger study, he focused on patients with a viral-type onset of CFS, and who had high titers for antibodies to EBV and HHV-6.
I had not heard details of the results of the larger study until this talk. He reported in the talk that they did find statistically significant improvement in some of the parameters they measured, involving fatigue and cognitive function, but I can't remember the specific test panels they used.
He showed the plots of the data, and there appeared to me to be quite a bit of "zigzagging" of the measured parameters as a function of time, as well as considerable overlap between the plots for the antiviral-treated patients and the controls. While comparison of slopes reportedly showed statistically significant differences between the two groups, I would not say that the differences "jumped right out" when I looked at the raw data. One issue was that the two groups, though composed of randomly assigned individuals, had fairly different average initial values for the measured parameters. So the final actual average values of these parameters did not come out very different between the treated and untreated group in at least one plot. Perhaps the differences would have been more striking if the number of patients had been larger, so that the average initial values of the parameters for the two groups would have been more nearly the same. This, of course, is limited by funding. I suspect that the reason these results have not been publicized much, though the study was done quite a while ago, is that they didn't show very striking differences. Hopefully this study can be followed by a larger one with a more focused subset of patients, and the results will be more clearcut.
Dr. Montoya plans to continue his study of viral involvement in CFS and has the funding (from several sources) to do so, as well as having established collaboration with other researchers at Stanford and elsewhere.
One point he made is that it appears that it is necessary to treat with an antiviral for a longer time than was done in earlier studies by others, which did not show positive results. One concern is whether there are serious side effects of longer term use of these drugs. Valcyte has been found to produce cancer in animals after long-term use. This has not been found in humans, but is a concern, and Dr. Montoya emphasized that the people in his studies are made aware of this as part of the required informed consent.
On XMRV, he reviewed the published papers, and concluded that the issue is not settled yet as to whether XMRV is associated with CFS or not. He will be participating in the NIH-sponsored study led by Dr. Ian Lipkin from Columbia University to try to resolve this issue. I asked him if he is currently testing patients for XMRV, and he replied that he has asked researchers from another department at Stanford to develop a test for XMRV, and they are working on it.
He emphasized that there appear to be subsets within the CFS population, and that there are elevated titers of antibodies to a variety of pathogens present in various patients. In addition to antibodies, his group is also measuring a variety of other parameters, including some cytokines.
On the PACE trial, he emphasized that cognitive behavioral therapy and graded exercise therapy should not be viewed as cures for CFS, and he showed quotations from the published study that showed that they really did not help very much.
Someone from the audience asked what the current waiting time is to get an appointment to see Dr. Montoya personally, and the answer from his staff was that it is running between two and three years at present. Dr. Montoya noted that his colleague, Dr. Andreas Kogelnik, is also seeing patients, however.
Those are the main things I can remember, and I recommend that people look for the video on youtube a few weeks from now to find out more.
Overall, I think that it is very significant that Dr. Montoya has been able to get a research program started at Stanford that is looking at infectious pathogens in connection with CFS and other chronic illnesses. I shook his hand after the talk and encouraged him to keep up the good work!
Best regards,
Rich
