Preliminary Surface View
TruGrit: DiPALS & RespiStimALS - Google Drive

This chart abstracts the losses during the DiPALS and RespiStimALS clinical trials.

The losing cohort in each temporal period is denoted in red; note the DiPALS control cohort is the only cohort with two losses; the DiPALS treatment cohort lost only once, . . . both of RespiStimALS cohorts are surgical cohorts but they incurred no loss temporal periods. In fact the RespiStimALS early stim cohort clearly outperformed the DiPALS NiV cohort (56 to 49 moons) and the sham RespiStimALS cohort might have if their effort was not curtailed by the possible problem DiPALS encountered.

Definitely a poor choice of emotocon if that is the one I picked, sorry. I am trying to show the data shows fewer deaths were occurring per time period in almost all of the time periods of the study when compared to the NiV cohort; with only one major exception . . . raises the possibility of statistical anomaly or even sabotage (remember, these studies are typically blinded but the DiPALS was open label (not blinded).
pacing patients in

Interventional procedure overview of intramuscular diaphragm stimulation for ventilator-dependent chronic respiratory failure caused by motor neurone disease

https://www.nice.org.uk/guidance/ipg...ments/overview

UK NICE = National Institute for health and Care Excellence

Note the expression on the cover page:

" . . .It should not be regarded as a definitive assessment of the procedure . . . "
🍦🍦🍦🍨🍦🍦🍦

One would EXPECT weaker results when fewer patients of a clinical trial cohort undergo an efficacious intervention, especially when those who did not undergo the intervention are included in the tabulations. Such weaker results would tend to corroborate rather than refute the efficacy claim, however stronger results may not. DiPALS did not accumulate sufficient information to form an independent opinion on the merits of the intervention's value and thus can not responsibly argue the intervention has general value because they do not have enough data for making the case. They wanted to consider the possibility certain subgroups might benefit from the intervention but could only advocate future research strive for improving the differentiation of candidate cases.

An important issue here is saving a distressed clinical study when the syndrome under consideration is highly variant in its effect on patients and getting partial value out of the developed results.

Steve Gleason delivers powerful speech as former NFL star is honored at 2024 ESPY Awards
2024 ESPY Awards: Steve Gleason delivers powerful speech as former NFL star is honored | CNN

Found a reference in the Getty Images database, which caption dated 18 October 2023 read this patient continues alive in Northbridge, MA . . . the image itself is not available . . . or maybe costs hundreds . . .

Discovered today:

First patient implanted in Massachusetts
Device helps ALS patient beat the odds – Boston Herald

and

Israeli 'AK'

data on the web shows both have crossed their twenty year mark!

Congratulations.

The Role of Biomarkers in ALS
The Role of Biomarkers in ALS | NEALS

Long the bane of medical research in Amyotrophic Lateral Sclerosis is the absence of biomarkers, which is the main topic of the afore referenced webinar. Another value of β-phragm pacing is the possibility of high precision though temporally limited biomarkers, referenced in this journal paper:

Identification of unexpected respiratory abnormalities in patients with amyotrophic lateral sclerosis through electromyographic analysis using intramuscular electrodes implanted for therapeutic diaphragmatic pacing
Identification of unexpected respiratory abnormalities in patients with amyotrophic lateral sclerosis through electromyographic analysis using intramuscular electrodes implanted for therapeutic diaphragmatic pacing - PubMed

Unofficial status of study WEB Pacer cohorts: SCALED
Unofficial status of study WEB Pacer cohorts: SCALED - Google Drive

There are 185 who underwent the intervention (implantation), there are 246 whose status regarding implant is unknown and they are presumed negative for implant. For comparison one could scale the 185 up (133%) or 246 down (75%), so columns for both are included. The pacer wins up to ten years; at this time is tied at ten years, behind by about one or two at the Texas threshold and by about three at the twenty year threshold. There are three bracketed thresholds, which have no historical backgrounds (but at present, with very low N, there is one tie and two losses). At least four patients were ineligible for implant because they were already long term survivors when the intervention became available. Hence it could be said, under scaled analysis the pacer wins all the categories . . . however, several continue to make headway and more improvement appears likely.

About a week ago, a patient known to be theologically active entered the 5,000 days bracket, about 183 Moons, bringing the 5,000 bracket into a tie at six patients each (six tried pacer, six undeclared status on pacer). The range from the Texas threshold to twenty years is very long (about eight and a half years) so I broke it up into three brackets (5,000, 6,000 and 7,000), which I am thinking of call the Seventh Inning Stretch . . . the other thresholds are ones known to be used in published papers. One leaves the 5,000 bracket by entering the 6,000 bracket but your count in the other thresholds stands forever.

another minor adjustment: three individuals appear in the data set but had not indicated their consideration of the pacer; one of them did not have symptoms, so I removed them from the numerical totals because there must be evidence of a prognosis and actual consideration of the pacer . . . this makes the 6,000 threshold a tie at this time also (also at six and six). Another individual was similarly situated in the 7,000 bracket so they too were removed from the numerical total and now the new totals are one did and three apparently considered the intervention but no indication they tried it was discovered as yet.