Czapliński Adam, als 16484652
Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population
Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population - PubMed (nih.gov)

New sensor uses MRI to detect light deep in the brain
New sensor uses MRI to detect light deep in the brain | MIT News | Massachusetts Institute of Technology

Should have included these in previous reference posts . . . .

2005
Adam Czaplinski, et alia
Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population
Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population - PubMed
n=1034

December 22, 2022
Alan Jasanoff, et alia
New sensor uses MRI to detect light deep in the brain
New sensor uses MRI to detect light deep in the brain | MIT News | Massachusetts Institute of Technology

Mapping light distribution in tissue by using MRI-detectable photosensitive liposomes
Mapping light distribution in tissue by using MRI-detectable photosensitive liposomes - PubMed

for whatever reason, the url's did not copy correctly in the previous post . . . the paper titles are there and can be used with search; however, these urls ought to get you to the journal paper itself directly.

alpha-tocopherol (α-tocopherol) is in

Vitamin E intake and risk of amyotrophic lateral sclerosis
Just a moment...

and is the only known substance showing statistically significant preventative affect of Amyotrophic Lateral Sclerosis, per above paper. The authors discovered individuals who took Vitamin E supplements reduced their risk of developing Amyotrophic Lateral Sclerosis more than fifty percent AFTER about ten years.

Several clinical studies tried detecting this effect but found no significant benefit in period (way too short to discover) . . . period was a couple of years.

The arena of an axon

Researchers try piecing together intel until a complete picture of the syndrome's etiology is developed. The earliest clinical evidence is not necessarily the original event! But, in the case of Amyotrophic Lateral Sclerosis, the first apparent event by most authors' reports is the disconnect of an axon from a muscle fiber. This is unlikely the actual first event because such disconnects happen naturally (or by injury) and possibly by necessity.
The Average Life Span of Skeletal Muscle Cells (seattlepi.com)
https://tinyurl.com/MuscleFiberLifeSpan

Thus a neuron's axon must find a way to connect a new muscle fiber (or reconnect an existing one). One of the amazing features occurring at the end of a neuron's axon is the build of a growth cone, which is a primary agent in the build of a synapse. Synapses are very small, estimated at around thirty nanometers:
Size of synaptic cleft - Human Homo sapiens - BNID 108451

Once a neuron's axon's growth cone reaches a location where a synapse could be built, it will literally try building another one . . . these are some of the 'agents' who work on the problem:
Growth cone - Wikipedia

Filopodia - Wikipedia

Lamellipodium - Wikipedia

If successful, the muscle fiber will become responsive to stimulation and contribute to the force the muscle produces.

This brief video shows the advance of an axon growth cone . . .
Live imaging of an axon growth cone - YouTube

. . . components of the axon are so small they are beyond what can be seen.

Some time ago I commented cells move around inside by 'walking on stilts . . . ,'
filopodia and lamellipodia are reflective of the stilt like structures facilitating the moment of new cells possibly into the space prior cells failed.

This paper reviews the processes in great detail . . . :

The Growth Cone Cytoskeleton in Axon Outgrowth and Guidance
The growth cone cytoskeleton in axon outgrowth and guidance - PubMed

I would not be surprised many non-biologists would find this paper (and some of the others) more difficult to follow.

A key point however, is why are the DiPALS results of 31 moons not seen as very different from the RespiStimALS result of 56 moons? A twenty-five moon difference ought not be overlooked. One big difference between the RespiStimALS study and the DiPALS study is the DiPALS study is the only one not 'blinded,' rather the study was open . . . exposed. The primary point of double blind placebo controlled studies is the prevention of tampering . . . no one can tamper with such studies because no one knows who is getting what. Such was not true in the DiPALS study.

Chinese man praised for taking care of disabled mom every day since he was 10 years old
Chinese man praised for taking care of disabled mom every day since he was 10 years old

Twelve years with ALS in China . . .

re: ". . . anything and exciting out there in the field artificial respiration? . . ."

Well, ECMO (Extracorporeal membrane oxygenation - Wikipedia) is new but its use is unprecedented in Amyotrophic Lateral Sclerosis and the iron lung is old but I do not believe its use was ever contemplated in this context, its consideration would be new: indeed there may only be one individual left on an iron lung. re: the pacer, the main new observation is the large inclusion of 'ineligible' patients in the DiPALS and RespiStimALS studies, which report I continue working on. My outline is nearly perfected.

Another critical flaw in the DiPALS report . . . long the bane of Amyotrophic Lateral Sclerosis patients: being counted as dead because they went on the ventilator . . . arguably sensible when, absent their vent, the patient would die almost immediately. In cases of the pacer however, this issue was moot because there is evidence of therapeutic value due the pacer use. The DiPALS study appears similarly in the extreme . . . their patients were counted as dead simply because they left the study. There were eight such patients in the pacing group before six months were reached, five were not even implanted but they were none the less treated as dead (even though alive) thereby the pacing cohort was the subject of an extreme handicap. The DiPALS researchers questioned the validity of the US FDA approval on the grounds of the absence of Randomized Controlled Trial but RespiStimALS also did a Randomized Controlled Trial with their study abending as the patients nearly reached the level of the patients in the studies the US FDA based their pacer approval on. The DiPALS study and the RespiStimALS study themselves are not in agreement with each other, even though in principle, they should be. I don't know why this is not pointed out by others?

The data itself in the RespiStimALS trial does indicate, as near as I can tell, a need for the RespiStimALS trial termination; instead the trial ended because the DiPALS trial problems, which possibly an indication of an undetected risk. Quite a lot of time has passed with no particular case injury reported. There is a new trial posted regarding the pacer.