I thought I should mention the status of my review of the data I have found on the internet provided by patients who have shared their experiences regarding their use of the pacer. I have found about 180 such patients, only three are believed to have been in the DiPALS study. Based on data supplied by the patients, the case for the pacer is STRONGER today than at any previous time. Plausibly, the _MEDIAN_ for well timed implantation of the pacer may bring patient survival to beyond six years - quite an improvement over the previous achievements. In Bulbar onset though, the _MEDIAN_ might only reach about three years.

As near as I can tell, the DiPALS group did not report change they detected in the FVC subsequent to implant, whether improved diaphragm movement developed, whether diaphragm thickness improvement developed or whether patients reported any improvement in their sleep - as the Onders group reported.

Its possible none of the DiPALS group's doctors met many of the implanted patients because the study was 'multi-center' . . . its theoretically possible no doctor met more than a dozen ALS patients who were implanted and thus it is reasonable to believe they would not go out on a limb in this case - most wouldn't based on such little evidence. Therefore, with few patient interactions, doctors are unlikely to form a strong opinion - they would need larger number of cases - they would want to see many clearly favorable ones.

Further, organizations newly implanting patients are likely to find a larger proportion of cases arriving late in the operating room because patients are more likely to make a timely arrival when the surgery was available in their locality at the time the opportunity window began to open. Such is apparently evident in the series of papers published by the Orders group reflecting steady improvement in apparent efficacy in the later cases.