*continued*

While the percentage of patients expected to exceed five years is about 20%, I discovered no written reports on the percentage of bulbar onset patients expected to exceed three years but presume their threshold is 20% too. Although fast regression cases of ALS are well known, no reference to their expected percentage of the whole is evident in any of the papers I read. The data I collected suggests the expected number of fast regression cases may be estimated as five to ten percent. Due to their shorter life expectancy, fast regression ALS patients are significantly less likely to make the radar of research studies. The DiPALS study had a disproportionate number of bulbar onset patients in the treatment group; did they also have a disproportionate number of fast regression patients? Further, many patients opted out of the DiPALS study before implantation could achieve meaningful success; the number of bulbar onset patients may have reached one-third of the those successfully implanted. Onders reported about 30% of the pacing patients eventually opted to turn off the pacer in order to be allowed to die.

Since none of the DiPALS treatment group patients survived more than five years, did the slow regressors opt out after selection? In the various disclosures from the web there are many implanted patients who survived more than seven years from implant - the question remains open whether there are ALS patients who qualify for the implant but for whom the treatment would not benefit - possibly because several diseases may cause ALS and one of the diseases could be made worse by the treatment. To the best of my knowledge and belief, the case remains there are no biomarkers to form a basis for a diagnosis . . . the cause or causes of ALS remain unknown. One ought not ignore the question of whether a patient might have lived longer if they did not undergo the implant? The DiPALS group does not specify particular patients or illuminate whether their vulnerability, if any, could be detected earlier. At present, no clear answer appears to exist . . . there are very few papers addressing expectations of patients over five years post-symptom onset; indeed, are there any?

*more soon*