Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
The Conference was taped and will be available (?Georgia MGFA site). Dr. Kaminski could not be there due to the hurricane and having to make up patient cancellations. But Dr. Cutter filled in well. About half the participants were seronegative, which would come as no surprise to us. Dr. Cutter made it clear in talking about the registry that seronegative MGers would not be excluded, not only so far as the registry was concerned, but in future studies; although there may be closer scrutiny as to diagnosis.
My discussion with him (off camera) regarding the reporting of statistics in the journals and literature was encouraging. He knew statistics were not being properly reported, but did not seem to realize the impact upon diagnosis and treatment. He seemed more willing to make an issue of the problem. Being a well known biostatistician, he should have more clout!
(For those who missed the prior discussion here, the difference between 80% of people with MG and 80% of people diagnosed with MG is very important and the strange logic of skilled practitioners doing SFEMGs and finding abnormalities in 99% and then saying from those findings that not having an abnormal SFEMG in a weak muscle ruled out MG which is bad enough for us, but is translated by many doctors into not having an abnormal SFEMG rules out MG no matter the skill of the technician or preparation of the patient, or choice of muscle. Even in that study, those skilled in this difficult test missed 1%. One in a hundred missed is not at all acceptable in medicine.)
Dr. Cutter talked about biomarkers which shorten and support research and help with funding. There are no good biomarkers in MG. That is to say no biological blood tests or findings that predict or determine severity or remission or cure. There are not many good biomarkers out there, but there is more money for research for specific illnesses, especially heart disease and cancer. He spoke of the registry of people with MS which is in service and on which the MG registry will be based. Many of the problems of privacy and access have already been considered there and safeguards implemented.
They are closing recruitment for the thymectomy trial and will then make the data coming from that trial available to researchers, although the actual publishing of the data is about five years away.
Let me say that this is a difficult trial for researchers due to the vagaries of MG, not to mention there can be no blinding as to patients, (no surgery that does not take out the thymus, but just opens the chest). It will be a help for our decisions, even if there are legitimate objections to the findings.
TJ will be happy to know that Dr. Hafer-Macko, presenting the exercise study, believes in sarcopenia in aging adults (which I don't and won't until they study Europeans or other older adults with active life styles. I will concede maybe some muscle loss after 80 (-: ). Her finding was that there was improvement in reserve for activities of daily living in participants in the study, but most importantly that there was no increase of disability with a gradual increase in exercise in those with MG who were STABLE FOR THREE MONTHS before entering the study. She did discourage the kind of exercise that they were doing-- treadmill, bands, etc.--until patients were stable. (My two cents, in agreement, is there is no need to incur a good reason for bodily fatigue, until you know what the monster can throw at you.)
Bruce put in a plug for our site.
Lunch provided was very good. There were more sweets than Dr. Hafer-Macko might approve, but apparently were approved by the participants! I think that those of us for whom the desire was not only to hear the speakers but to see, hug, and converse with those we meet here on a daily basis would not have been TOO disappointed if none of the speakers had shown! I had a wonderful time. My trip over the mountains was especially beautiful and, although long, added to the enjoyment of those days. b.
My discussion with him (off camera) regarding the reporting of statistics in the journals and literature was encouraging. He knew statistics were not being properly reported, but did not seem to realize the impact upon diagnosis and treatment. He seemed more willing to make an issue of the problem. Being a well known biostatistician, he should have more clout!
(For those who missed the prior discussion here, the difference between 80% of people with MG and 80% of people diagnosed with MG is very important and the strange logic of skilled practitioners doing SFEMGs and finding abnormalities in 99% and then saying from those findings that not having an abnormal SFEMG in a weak muscle ruled out MG which is bad enough for us, but is translated by many doctors into not having an abnormal SFEMG rules out MG no matter the skill of the technician or preparation of the patient, or choice of muscle. Even in that study, those skilled in this difficult test missed 1%. One in a hundred missed is not at all acceptable in medicine.)
Dr. Cutter talked about biomarkers which shorten and support research and help with funding. There are no good biomarkers in MG. That is to say no biological blood tests or findings that predict or determine severity or remission or cure. There are not many good biomarkers out there, but there is more money for research for specific illnesses, especially heart disease and cancer. He spoke of the registry of people with MS which is in service and on which the MG registry will be based. Many of the problems of privacy and access have already been considered there and safeguards implemented.
They are closing recruitment for the thymectomy trial and will then make the data coming from that trial available to researchers, although the actual publishing of the data is about five years away.
Let me say that this is a difficult trial for researchers due to the vagaries of MG, not to mention there can be no blinding as to patients, (no surgery that does not take out the thymus, but just opens the chest). It will be a help for our decisions, even if there are legitimate objections to the findings.
TJ will be happy to know that Dr. Hafer-Macko, presenting the exercise study, believes in sarcopenia in aging adults (which I don't and won't until they study Europeans or other older adults with active life styles. I will concede maybe some muscle loss after 80 (-: ). Her finding was that there was improvement in reserve for activities of daily living in participants in the study, but most importantly that there was no increase of disability with a gradual increase in exercise in those with MG who were STABLE FOR THREE MONTHS before entering the study. She did discourage the kind of exercise that they were doing-- treadmill, bands, etc.--until patients were stable. (My two cents, in agreement, is there is no need to incur a good reason for bodily fatigue, until you know what the monster can throw at you.)
Bruce put in a plug for our site.
Lunch provided was very good. There were more sweets than Dr. Hafer-Macko might approve, but apparently were approved by the participants! I think that those of us for whom the desire was not only to hear the speakers but to see, hug, and converse with those we meet here on a daily basis would not have been TOO disappointed if none of the speakers had shown! I had a wonderful time. My trip over the mountains was especially beautiful and, although long, added to the enjoyment of those days. b.
Hope everyone is having a good day!!