Thanks for posting the report. I heard those results a while ago and find them very discouraging. It is true that some of the ALS experts I know have been unsupportive of this technology. But we all know PALS who believe they benefited including members of this forum. It will be interesting to see the results of the US trials
As the authors conclude, the findings do not exclude subgroup benefit. I suspect wide variability in if/how BiPAP was used among treatment and control groups, as well as in the historical controls used in the HDE approval study, is part of the conflicting results, as well as sampling issues inherent in any big ticket device trial in a terminal disease.
Reviewers have been noting since the HDE was granted that there are some fundamental mechanistic concerns in ALS (what are we doing to the dying battery -- quite different than spinal cord injury), so this remains an individual context/decision, not a slam dunk.
We were advised by Mayo of the results a few months back and given the option to continue in the US study or stop. My wife decided to stay in the study as we think it has help her. If you graph her results of FVC it is a fairly straight line decline until implementation of the DPS. At that time the slop of the decline levels slightly and continues in a straight line again. Believe it will only result in a few month additional time, however it does indicate a benefit and the study needs to be done so others know if the risk if worth the effort. Mayo indicated they only had one person drop from the study