A new MAUDE report involving non-ALS patient who used the device for more than two years appears in the FDA MAUDE database as received Jul 19 bu FDA.

VICE on HBO: Angelina Fanous' Debrief on Living with ALS

VICE on HBO: Angelina Fanous' Debrief on Living with ALS - YouTube

Life expectancy is often misunderstood and similarly often incorrectly represented. The 'official' quote once was 1-3 years for bulbar onset and 3-5 years for limb onset, now they more often say 2-5 years without mentioning onset. Numerous studies, however, have shown typical patients have less than a fifty-fifty chance of making three years from symptom onset, even in limb onset ALS. When they mention the life expectancy numbers they are almost always talking about averaged survivals from DISEASE ONSET to death: not diagnosis. Because some patients live quite a long time they tend to draw such average up much more than those with 'fast regression' draw the average down. Since they are around longer they are more likely to be detected surveys and therefore included in new calculations, too. The mid-point of limb onset tends to be about eight months longer than the mid-point for bulbar onset yet neither produces reliable predictions (medians not means). Most scholars consider remaining life expectancy nearly impossible to predict. There are positive and negative co-factors but exceptions are found to be numerous. Patients are wise to live each day as though it would be their last. Perhaps unsurprisingly, patients who are theologically active often appear to live longer. The difficulty of predicting life expectancy is one of the most problematic components of clinical study design.

I removed Mr. McFarland from the bulbarians table because, as you can see from their more recent video, his voice remains strong but obvious signs of ALS remain . . . hence he belongs in the limb onset group:

JIM MCFARLAND needs "YOUR" help to WIN his ALS battle! | Medical Expenses - YouCaring

I have nearly completed the update of the data from patient web disclosures and the case favoring the pacer continues to strengthen; given the findable cases efforts to make even a preliminary case against the pacer will likely only produce very weak and vulnerable case . . . one of the biggest difficulties I am working on at the moment is many patients have not indicated their onset date and the result makes their status a problem of weighing estimation algorithms. In many cases patients can be determined to have a favorable status based on the rest of the available information they apparently provided where they appear very successful but when cases are close calls the issue is quite difficult to decide. There are about 57 of about 180 cases where onset date is not indicated. Although there are many remarks looking for a +16 month improvement there are many cases closer to a +6 month improvement. Dr. Onders apparently gave a speech in Athens recently (December, 2015):

ALS Worldwide In Athens, Greece: Recording
ALS Worldwide In Athens, Greece: Recording | ALS Worldwide

where he reported more than 1500 implants are completed; the previous report of this kind was given in Canada, where he reported in October of 2014 over 700 implants were completed. Of course many more cases were prognosed than underwent implantation. I hope to have some kind of outline of a summary statement posted here by Monday, August 22, 2016. Thank you for your patience.

Original claim of 16 month improvement in average survival increased to 19.7 months and then 20.9 months, has reached 22 months (apparently reported yesterday) and I expect further improvement will develop as patients reach the operating room closer and closer to the temporally optimal 'window' for pacer implant. Since 'average' in ALS is almost always significantly higher than median, most patients will experience weaker than average benefit but substantial plurality ought to exceed same and the average, in my opinion, will likely continue to increase. It remains too early to tell how typical patients will benefit and some might not have, however, the Bulbarian's table shows at least six month improvement may be possible for most patients. Patients suffering fast regression or whose onset is near the lower motor neurons of the pulmonary system may not benefit much from the treatment. I will elaborate on this issue in future posts. The course of regression remains so difficult to predict most continue to maintain such is impossible to do.

Two quick points . . . :

At present, of the 175 patients who have disclosed pacing data via the web, 102 have exceeded three year life expectancy, more than 58%, whereas ordinarily less than 50% would be expected to do so. There are 67 cases who did not include their onset date.

At present, of 100 patients who have disclosed pacing data via the web, where their data is sufficiently complete, 45 have exceeded five years . . . 55 have not done so but of these 11 may still do so. The expected number of patients exceeding five years is about 20% . . . far less than 45%.

There are an estimated 100,000,000,000 neurons in the human connectome; a synapse is a connection from one of them to another, therefore:

99,999,999,999:99,999,999,998 might identify a synapse were there only one synapse possible per pair of synapses. But there could be more than one. Since there are a few quadrillion synapses, storage holding a number like 9,999,999,999,999,999 ought to be able to able to be enumerative of them.

99,999,999,999:99,999,999,998;9,999,999,999,999,99 9 ought to be sufficient to store an identification for each synapse (fifty-one digits) - with the hope of whether one could reliably enumerate a specific neuron's synapses. Such might not be possible, however the following elaboration relies thereon:

Fifty-one digits is sufficient to identify each of the quadrillion synapses and a list containing all the synapses would be fifty-one quadrillion bytes long. We will only need to place one digit in one byte at this time. In order for representation of each synapse to be stored as implied above, we will need about 1,001 terabyte hard drives. They are in the neighborhood of $30 per terabyte these days - so such a storage device would cost about $50,000.

unusual error: '. . . 99 9 ought . . .' the space between the nines is presented apparently by the BBS software running the sight; I tried to edit out the space and found it does not appear in the text I submitted.

'. . . possible per pair of synapses . . .' should read ' . . . possible per pair of neurons . . . ' in post of 8/30/2016 above.