[MuonOne]

It looks very likely TransFatty will make the New Year and cause the pacer intervention internet cohort to edge ahead of the nonpacer intervention internet cohort during the event called New Year's Day . . .

TransFatty
TransFatty Lives (2015) - IMDb
Trans is currently working on a new film from his abode Admiral Hill in Chelsea, Massachusetts.

The updates summary statistics will look like:
update alpha als - Google Drive

and already shows the pacer intervention cohort leading the unknown (dk) group in the thresholds with multiple publications . . . strictly speaking the twenty year threshold is tied by raw count at six patients each but there are 181 patients discovered who disclosed their pacer intervention and 234 patients who expressed an interest in the pacer intervention but who have no known internet disclosure on whether they actually underwent the procedure.

This news is good as it shows the pacer remains strong candidate for best intervention so far discovered but implant timing is critical . . . too soon, implant may be less than optimal, too late and much of its value may be lost.

DiPALS reported issues with their study on the pacer but have yet to profile any case in particular. Hopefully, their negative sounding report is a false negative. Emerging interventions have been known to have false negative study results, riluzole has one example . . .

[MuonOne]

Here are two references:

Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease--a record linkage study from the Scottish Motor Neurone Disease Register
Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease--a record linkage study from the Scottish Motor Neurone Disease Register - PubMed
" . . . The 1 month mortality after gastrostomy was 25% . . . "

[Neuroprotective therapy for amyotrophic lateral sclerosis (ALS)]
[Neuroprotective therapy for amyotrophic lateral sclerosis (ALS)] - PubMed
" . . . but the effects were insignificant in the Japanese nation-wide trial."

Regarding riluzole in Amyotrophic Lateral Sclerosis, regarded as +three moon shift in survival medians; survival term improvement from gastrostomy is unclear.

[MuonOne]

A researcher in an Amyotrophic Lateral Sclerosis lab involved in the latest BCI clinical trial activity mentioned 68 patients have undergone BCI implant for quality of life improvement - primarily the ability to control/user computers; some of these patients are Amyotrophic Lateral Sclerosis patients. They further advised the diaphragmatic pacer intervention remains viable and in active research . . . Since the various BCI devices can provide access to the natural 'Breathe' signal one's brain produces a problem with Noninvasive ventilation and diaphragmatic pacing can be alleviate, maybe even eliminated . . . the signal can be used to synchronize pulmonary muscle activity and thereby improve the performances of these medical intervention . . . produce median shifts beyond twenty moons.

The BCI researchers are seeking to substantially advance the number a patients the US FDA will allow to undergo BCI intervention . . . don't hold your breath, but this is good news and likely to be true to the best of my knowledge and belief.

[MuonOne]

Just noticed the pacing Amyotrophic Lateral Sclerosis patients passed six centuries since engaging pacing with Amyotrophic Lateral Sclerosis.

Also wished to point out Pitie Salpetriere University Hospitals was ranked 8 in the world.

[MuonOne]

Ah good news . . .
Apparently you can now access an additional part of Onders's papers "Identification of unexpected . . . " of 2015,

https://tinyurl.com/ALSabigOne

The journal paper was available only on a fee basis, thus you had to get by a "pay wall" to access the paper. I was lucky and received a courtesy copy from the Onders team. One could always access the title and the thesis commentary subsequent to publication, but now a new service called the Semantic Scholar is providing a little more access, including the full size edition of Figure 1. This figure shows one patient and three sets of electromyogram trace pairs . . . each pair includes the signal in the port ß-phragm with the signal in the starboard ß-phragm; the heart is above the starboard ß-phragm. There are three thirty-second long pairs for this patient: the first of the first pair shows the ß-phragm port signal and the second shows the ß-phargm starboard signal. Note the heartbeat signal is very strong in the starboard side and barely perceptible in the port side because the heart itself is located in the starboard side of the thoracic and therefore is very near the sensor probe, which picks up the heart beat signal along with the synaptic signals. This patient's heartbeat signal is very good in this patient's heart is likely in great shape . . . now the most interesting part:

The first pair shows the signal when the patient is using Noninvasive Ventilation (BiPAP) . . . the ß-phragm's signals are almost turned off, thus they are not working; in the second pair, Noninvasive Ventilation is off and the ß-phragm signals try to become active but are obviously very weak; in the third pair both Noninvasive Ventilation (BiPAP) and the ß-phragm signals are active. The third pair clearly has the strongest signals, with about thirty synapses within the reach of each of the probes all appearing to fire smoothly. This is the way it should be and shows properly deployed, pacing can be very helpful; alas, this is N=1 and we need N>1000's with time periods much longer than ninety seconds. This is a lot of data but it has real biomarker value, so the pacer will likely continue to be the most valuable intervention available for patients so long as they time the implantation properly.

[MuonOne]

RespiStimALS's lead surgical team is located at Pitie Salpetriere University Hospitals . . .

[DocJohn]

The paper itself is still behind a paywall, fyi