Of course, a normal person would expect that a normal business of any kind would respond to ALL communications within a day or two of their receipt, if nothing else with a “form letter,” saying, something like, “Dear ______, We have received your communication of ______, 2012 and want to let you know that we are giving it every consideration. We hope to have a response to you by ______, 2012. If for some reason we fail to get back with you by the date listed, please feel free to call Ms./Mr. _______ at _________, ext _______ for additional information and assistance.” I didn’t make up this “form letter”: it is a communication I received recently after writing to a “mom and pop” (2 person) business on Amazon that sells used & remaindered books for pennies on the dollar. They subsequently called me to answer my question – and I was not yet even a customer!

Consider the following exchange between Alcor and me. The context here is that I am functioning as scientific journalist making what I believe most people would consider to be a reasonable request for information for a public article aimed at saving Alcor members’ lives. Unlike most journalists, I’m willing to share the context I want to use the requested data in, and go so far as to provide other (presumably) useful data, gratis.

I make my first request on 3/28/2012 for basic demographic data on ~ 20 Alcor patients which is missing from the on-line list maintained by Alcor . All I want to know is how these 20 people deanimated – specifically, how many deanimated as a result of a likely or potentially preventable cause, such as a heart attack, ruptured aneurysm, or other occult disease that could have been detected by medical imaging, such as a full body or head scan, if such a test were carried out prophylactically before medico-legal death occurred.

I got an initial prompt response, including an offer by Dr. Mike Perry, which was sent on 3/29/2012, to review the death certificates of the ~ 20 patients and get me the data. That is the last I hear from anyone at Alcor. I proceed to publish the article minus the data from the ~ 20 patients I needed to determine if the subgroup of Alcor cryopreservation patients are indeed experiencing significantly higher “mortality” from sudden and unexpected death than are a similar (age adjusted) cohort of the general population. One hypothesis I have for why this MIGHT be so, is that it MAY be the case that the skewed demographic of cryonicists towards males may account for this phenomenon, providing that it is real. Males have a much higher incidence of sudden and unexpected death than do females….

I rearranged the structure of the article contents to delay publication of the section that contained the data I needed until 4/12/2012. This is fully 2-weeks after I made my first request, and after Dr. Perry responded.

When, on 6/16/2012, I mention is passing (publicly) on Cryonet that I never received the requested data (or heard from Alcor as to when it might arrive (beyond Dr. Perry’s offer on 12 April)), I get this public response from Max More:

“That was a few days ago. Work in being done on this. Patience, frantic one. You’re not the only one interested in the results.”

This response coming as it did 18-days after my first request! It is now 04 May, well over a month later – still nor data, but more importantly, no response, update, communication or “howdy do” from Alcor… The complete email traffic is reproduced below:
________________________________________
From: max@alcor.org
To: M2darwin@aol.com
CC: aaron@alcor.org, Hugh@alcor.org, mike@alcor.org, lisa@alcor.org, max@alcor.org, diane@alcor.org
Sent: 3/29/2012 12:06:55 A.M. Pacific Daylight Time
Subj: Re: Questions about causes of death

This is a worthy project, but I will be unable to assist with it earlier than next week. Aaron is away for a week caring for an ailing family member. Diane could gather some of this information.

–MM

On Wednesday, March 28, 2012, wrote:

> Hello All,
>
> I’m trying to finish up an article on a recent technological advance which I believe could greatly reduce the number of cryonicists who experience sudden, or unexpected cardiac arrest (deanimation). A critical part of my argument is to document the prevalence of this phenomenon in a real cryonics population as it impacts access to high quality (minimal ischemia) cryonics care. That necessarily means that I cannot use CI as a real world example, since they do not offer standby or otherwise take steps to minimize post cardiac arrest ischemic time.
>
> I have reviewed the complete list of Alcor cases available on line and made a crude table, using my own judgment, which will suffice for this article. However, I’ve run into a problem which concerns me and which prompted me to write in the hope that one or more of you might be able to help me fill in the blanks.
>
> The causes of cardiac arrest are listed for all Alcor patients except for these:
>
> A-1670, A-2077, A-1398, A-2264, A-1411, A-1889, A-1194, A-1951, A-1949, A-1891, A-1300, A-1756, A-1894, A-1502, A-1216, A-1261 A-1753, A-1743, A-1457, A-1755
>
> I do not need specific information for each case number (if that would present a problem). All I need is a determination for each of the above as to whether the cause of cardiac arrest was sudden and unexpected or not, and due to natural causes. In other words, members who arrested not as a result of suicide, accident or homicide unless such an unnatural arrest was the direct result of a previously unknown medical catastrophe, such a heart attack, stroke, aneurysm, brain tumor, etc.
>
>
>
> I know that you are all very busy and I also know that you may be unable to help me. If so, that is certainly understandable. The graph above shows what my data set currently looks like excluding the patients that I’ve asked for you assistance with. Even in this crude state, filtered solely by own (limited) judgement, I think it is easy to see why so many people feel an unspoken sense of discouragement about signing up for cryonics. The black wedge of the pie represents patients who have suffered autopsy or very long ischemic times and who, at least in my opinion, regardless of any prophylactic technology now available, or soon foreseeable could not have received better care. These are people who suffered accidents, suicides, homicides and the like. The yellow wedge consists of “borderline cases” that technology might have helped. However, that large red wedge, which is arguably a third of the pie, consists of people who suffered long ischemic intervals who very well might not have had to.
>
> The problem is that I’m missing 20 patients from my data set and that’s quite a lot. I’d rather not have my conclusions based on data that is badly skewed, so I’d much appreciate your help if it is possible.
>
> Finally, a tool that I think will be of incredible importance to cryonics, both now and in the future, is to create a comprehensive actuarial database of all patients (and members too) so that it is possible to interrogate that database for information like that above, as well as for myriad other questions such as, for example:
>
> How long do Alcor members live? What is their mean age at cryopreservation? What is the mean weight of a cryopreservation patient at the time they arrest? What is the incidence of type II diabetes amongst cryopreservation patients, amongst Alcor members? What is the incidence of dementia in cryopreservation patients?
>
> I realize that this must seem an overwhelming task, but in fact, much of this information is already collected and present on the patents’ death certificates. What is needed is for a staff member or trusted and vetted volunteer to enter it into Excel, or another interrogatable database
>
> At any rate, thank you for your time and attention. Should you be unable to assist me, please, simply send an email letting me know.
>
> Thanks again.
>
> Mike Darwin
_____________________________________________________

M2darwin@aol.com
To: max@alcor.org
CC: aaron@alcor.org, Hugh@alcor.org, mike@alcor.org, lisa@alcor.org, diane@alcor.org
BCC: mdf1960@yahoo.com, eleitl@gmail.com, aschwin.de.wolf@gmail.com
Sent: 3/29/2012 12:37:11 A.M. Pacific Daylight Time
Subj: Re: Questions about causes of death

Thank you. I will take what you can give me. I will probably proceed to post the article as soon as it is finished. I can then go back and adjust the data and the conclusions as necessary. I think the ratios will remain about the same between the groups, but with the sample sizes so small, it is hard to be sure, and I’ve been burned badly before.
You might find these data interesting (although I think they are badly presented):

This is the autopsy rate in the US between 1972 and 2005 – the bottom black line is the total % of all deaths, which was 8.5%. About half of that 8.5% was due to diseases, and thus, in theory, should be preventable by properly conducted routine medical imagining. The (to me) confusing blue and green lines are the fraction of total autopsies conducted for the stated reasons – external causes being suicide, accident and homicide.

Mike Darwin
____________________________

From: mike@alcor.org
To: max@alcor.org, M2darwin@aol.com
CC: aaron@alcor.org, Hugh@alcor.org, lisa@alcor.org, max@alcor.org, diane@alcor.org
Sent: 3/29/2012 10:37:50 A.M. Pacific Daylight Time
Subj: Re: Questions about causes of death

I could check death certificates. Sunday would be a good day for doing this for me, if Diane hasn’t already gotten the information.

Mike
______________________

From: max@alcor.org
To: mike@alcor.org
CC: M2darwin@aol.com, aaron@alcor.org, Hugh@alcor.org, lisa@alcor.org, diane@alcor.org
Sent: 3/29/2012 2:55:34 P.M. Pacific Daylight Time
Subj: Re: Questions about causes of death
That would be good. Thanks, Mike.

Please be sure to copy me on whatever information you dig up.

–Max
__________________

From: M2darwin@aol.com
To: mike@alcor.org, max@alcor.org
CC: aaron@alcor.org, Hugh@alcor.org, lisa@alcor.org, diane@alcor.org
Sent: 3/29/2012 1:33:28 P.M. Pacific Daylight Time
Subj: Re: Questions about causes of death

Great! That would be fantastic. Thanks

Mike Darwin
________________________

From: max@maxmore.com
Reply-to: New_Cryonet@yahoogroups.com
To: New_Cryonet@yahoogroups.com
Sent: 4/16/2012 10:04:24 P.M. Pacific Daylight Time
Subj: Re: [New_Cryonet] narrowcasting 4 nerds whilst whalehunting

Mike Darwin wrote:

“I made a request of Alcor to provide me with the causes and modes of death on the 20 patients for which it is not specified on their master list of all Alcor patients. Mike Perry responded that he would try to do this by reviewing the death certificates of those patients. That was the last I heard.”

That was a few days ago. Work in being done on this. Patience, frantic one. You’re not the only one interested in the results.

A more detailed and informative database of Alcor patients is a worthy cause. When I came on board, I was surprised by the extremely limited functionality of the database. Since then, we’ve had our IT company improve it. Further refinements are likely.

It can be challenging to get members to send us their medical records. Getting access to them post-mortem (by current criteria) can present additional challenges. Some of the demographic details you mention should be easier to uncover and record. One that especially concerns me is the size and weight of Alcor members. Given the disturbing trend towards morbid obesity (as so effectively and repulsively illustrated by your post on people in motorized carts — and in the distressing plausible future of Wall-E), I’d like to better anticipate the need for extra-large pods and the resultant higher storage costs for oversize whole body patients.

–Max

On Mon, Apr 16, 2012 at 3:00 PM, wrote:

If you do the math you can figure that out, roughly, for yourself by looking at the month to month dropouts, reinstatements and new members.
However, you raise a point which I was at pains to discuss in Part 2 of my “Much Less Than Half a Chance” article http://chronopause.com/index.php/2012/04/03/much-less-than-half-a-chance-part-2/ and that is, namely, that apparently NONE of the cryonics organizations maintains any comprehensive statistical database of any kind:

“To do that, it is first necessary to move beyond anyone’s scenarios or suppositions and evaluate the reality of what is actually happening to the patients we cryopreserve. That turns out to be a hard thing to determine with any degree of precision, because none of the cryonics organizations maintain any kind of statistical database on their members’ cryopreservations. How many cryopatients have dementia? How many were autopsied? What is the mean ischemic time from cardiac arrest to the start of cardiopulmonary support (CPS)? How many patients have ischemic times of 2-5 minutes, 5-10 minutes, 15-30 minutes, 12 hours, 14 hours, 5 days? What is the mean age at cryopreservation? [Absence of data on this last question I find particularly amusing in a group of people supposedly preoccupied with longevity and "life extension": how long are they living, on average?] There is currently no way to tell.

There is not even any way to determine the age, gender, or any of dozens of other potentially critically important demographic details that are, or could be vital in assuring quality cryopreservations, reducing ischemic times, or reducing known iatrogenenic events. A concern of mine for onto three decades now is that we have no way to spot adverse epidemiological events that might be associated with our unique dietary supplement or other lifestyle practices. Perhaps most incredibly, there are no written criteria, however arbitrary, to assign any degree of quality, or lack thereof, to the cryopreservation a given patient has received (let alone that a given Cryonics Organization (CO) provides, on average). This had lead to what has become known as “the last one is always the best one” to date rating system, wherein each case that is not either an existential or an iatrogenic disaster, is pronounced by the staff who carried it out as, “the best case we’ve done so far!”
We cryonicists may be in some kind of willful, data free fog about what our situation is, however, it’s a safe bet to assume that most of the rest of the world, based on their own professional and personal experiences, are not so ignorant. The first step towards a solution is to understand the scope and severity of the problem by getting reliable numbers. While that is not easy to do, the Alcor Life Extension Foundation does maintain a crude, if incomplete accounting of all the patients they have placed into cryopreservation: http://www.alcor.org/cases.html. A cursory analysis of this yields the following breakdown. Even basic data such as cause and mode of death are missing from ~20 of the cases listed there – these have necessarily been excluded from the analysis below.”

I made a request of Alcor to provide me with the causes and modes of death on the 20 patients for which it is not specified on their master list of all Alcor patients. Mike Perry responded that he would try to do this by reviewing the death certificates of those patients. That was the last I heard. I’d still very much like to get this data (I don’t need to know which cause and mode goes with which Alcor ID number – just the data is fine).

No viable organization fails to gather and track this kind of demographic data – not just about patients, but about members – how long they remain members, why they leave, what percentage get cryopreserved from a given cohort (and how), what the age distribution is, how they were recruited, and on and on. That information is 24 karat gold and it was my bread and butter when I was President and even when I was a Director. This is the kind of information I review almost weekly on Chronosphere in terms of number of RSS feed subscribers, number of visitors, past posts accessed, URLs clicked, referrers, and so on.

One thing I noticed in doing the stats with the available data is that Alcor patients have a higher than average incidence of sudden and unexpected death for the subgroup of the general population they represent (white, highly educated, middle to upper class). Without the missing data on the 20 patients, it is impossible to tell if this observation is valid, or if my speculation about the cause is valid – namely that a disproportionate number of patients (and cryonicists) are MALE, and males have a much higher incidence of sudden & unexpected death than do females – heart attacks, stroke, accident, homicide and suicide are higher in males.

So, go figure. This kind of data is also absolutely critical to warn you of dangerously unbalanced demographics in terms of age, ideology, disease burden, and so on. As a hypothetical example, if 30% of your members are male homosexuals and AIDS happens, that’s information you really need to know as soon as possible. Ditto if you have say, 100 members living in Hong Kong, and SARS breaks out.

So, there is nothing “sinister” about Alcor not disclosing that information. The simplest answer was the likely correct one: they probably don’t have it!

Mike Darwin
___________________________________________________________________________________
Of course, this was an unsolicited inquiry, and, as such, it might be argued that a letter from a critical crank (like me) who is “always” “attacking” Alcor merits no quick response; and certainly no TLC in terms of updates. Fair enough, I suppose.

But consider this exchange:

From: M2darwin@aol.com
To: max@alcor.org
CC: diane@alcor.org

Sent: 4/14/2012 1:07:31 A.M. Pacific Daylight Time
Subj: Re: Progress with your insurance policy?
In a message dated 4/14/2012 12:23:17 A.M. Pacific Daylight Time, max@alcor.org writes:

You (MIKE DARWIN) said:

“I think it is very important that when a member does not have coverage that that be made clear every step of the process that the condition persists.”

MAX MORE: Yes, absolutely. I would think that it would be clear that if a member’s sole method of funding is through life insurance, and that policy is not currently regarded as funded by the insurance company, that the member would understand that they are not covered by Alcor. In practice, the situation can be more complex and unclear. If you have specific suggestions on how to clarify this to members, please tell us.

DIANE: Next week, let’s talk about this, and make sure we are as clear as possible to members about the status of their coverage.

MIKE DARWIN: Here are my thoughts, for what they are worth:

1) You need a clear, pleasant and uniform way to inform the member that his coverage is still in abeyance. Maybe stating up front, in fire engine red lettering, that all communications will have a “current status line” or box which tells the member where he is currently “at,” and which also informs him of how and when he will be informed that his coverage is restored. I think it would be nice to offer the member an option of a prompt, personal phone call to notify him of re-instatement of coverage.

Email is just a mess for many, if not most people these days. It is easy to miss a message, or to accidentally delete one while culling spam, or messages that you just don’t want to deal with…

I don’t know if most members in my position care sufficiently to want have a POSSIBLE timeline to re-instatement? But I think you can see how even someone well acquainted with cryonics could be completely at sea as to how long it will take to get coverage back. There’s a huge difference between 10 days and 3 months, for instance, just to pick an example out of the air.

2) I don’t think you should be billing the members for CMS if he doesn’t have coverage. That’s not only not just, it is very confusing. If I start getting invoices for CMS, then I think it is reasonable to assume that I’m covered.

Also, for someone like me, $180/quarter is a lot of money. There’s no way I can communicate how much money that is to me. All I can say is that when you fall below a certain economic minimum and you have, fixed, vital expenses, you experience a degree of financial inflexibility and personal inflexibility that is just impossible to understand unless you’ve experienced it.

Being young and poor is completely different than being older, or old and poor. My not covered Rx bills are over $150/mo. I can’t just decide I’m not going to take my meds because I’m running tight on money. And I clearly need to keep my mobility, which means vehicle associated expenses. So, it’s much different than when I was young and I could let things like health insurance slide, and when I didn’t have “anchoring” assets, which also require recurring funding. Finally, I can’t increase my income, which is something young people have the option of doing. And the situation is just going to get worse and less flexible with time.

Mike Darwin
________________________________

The material difference here is that I was specifically asked to provide input on how to possibly decrease confusion and increase clarity of members’ status who have cryopreservation arrangements in abeyance. Now, it is quite possible that these suggestions were not useful, or were even considered superfluous or ridiculous. However, that is irrelevant to good, commonsense business dealings. When anyone takes the time to provide REQUESTED feedback, then that merits a prompt (most would say immediate) pro forma communication saying something like, “Hi _____, just a note to let you know we got your suggestions and will be evaluating them. Thank you for taking the time to write down your thoughts on this matter. Sincerely ______, Alcor Life Extension Foundation.”

I made as many inquiries in the community as I know how to, and this lack of responsiveness is apparently either not uncommon, or routine. [I have formulated several Survey Monkey surveys, but am not sure how to get them to the necessary demographic.] While you can indeed run a business that way, you can only do so if you are a utility, a company town (store), or some other kind of monopoly. Members, clients or customers don’t generally like being treated that way. Just as you migrated to CI because of their human attentiveness, so too have a number of other Alcor members (I know this first hand). I will also say that Any Zawacki is a very nice and decent person who has gone out of his way to be helpful to me at considerable personal cost; and with nothing to show for it. Since I have been critical of CI, that speaks volumes about the kind of (quality) person that Any is. And, to be clear, Ben Best has almost always been fair; and has always been responsive and forthright in his dealings with me, despite having received harsh criticism from me. Again, this speaks very positively about Ben’s ability to compartmentalize his feelings and behave professionally, even when it may be difficult for him to do so.

I will, of necessity, shortly have much more to say about Alcor’s DNR policy. However, I expect it will do no good, based on past experience. This is as much the cryonics community’s fault as it is Alcor’s. Why should Alcor change its behavior if there are no adverse (public) consequences? I would also point out that some staff at Alcor, such as Diane Cremeens, have proven helpful, kind, courteous and responsive with reasonable to good follow-through.

As to what to do re Thomas’ writings, I wish could recommend a course of action. Based on my past experience, Alcor is mostly indifferent to the value of intellectual property, unless they believe they can get it for free (no strings attached). They do not seem to systematically attempt to license, or otherwise profit from IP under their control and, in my experience in the past, are DNR with respect to suggestions about how they might do so. Maybe this is just as well, because whenever it is necessary to actually deal with them on some matter, it quite often becomes a long, drawn out, unrewarding bureaucratic nightmare at the end of which, no solution is reached- typically a symptom of a CEO who is not empowered and is being operated via remote control by a committee, or who is not capable of independent judgement or action. — Mike Darwin

I agree his intellectual first life cycle should continue. I intend to start regardless. I am getting VERY ANNOYED with the lack of response, and in paranoid fashion am starting to wonder whether Board members are suppressing the re-publication of some of his writings in the way a number of his articles critical of Nanotechnology were refused publication by Ralph Merkle as Board member prior to his suspension. Apologies for the tardiness of this response, but I am giving Alcor board time to respond. I do not intend to “nag” them. One request is enough. I am a very busy person like most people, and wasting my time is WASTING MY LIFE.

There are some space operas from 1920/30s which clearly spell out the whole concept of Singularity (sequence of machines building next generation of machines in a runaway progression), and the end of Man.

Watson and Crick published in 1953, the first gene was sequenced in 1972, the first genome in 1977. Now we’re in 2012, and our abilities to produce sequence data far eclipse our abilities to make sense from it. I personally consider genomics a great disappointment, since our abilities in therapeutics and synthetic biology have not progressed nearly in the same fashion.

Machine-phase nanotechnology is today not nearly where genomics was in 1972. Unlike genomics, machine-phase requires some considerable initial capabilities in preparative bond formation and scission in order to be able to assist with its own advance in the same fasion that computers have helped themselves and also genomics.

Give it time. In another half century — assuming the humanity does not produce a collapse and long decline — machine-phase will deliver. Meanwhile, don’t give up home.

You’re comparing genomics, a mature science, with molecular manufacturing which is some 40-50 years away from where genomics is now. If you expected mature capabilities by now you did not have a good model of the problem space.

The field you’re now calling connectomics is also hardly recent and equally remote from production as machine-phase is now.

The current work is largely theoretical as before you can attempt bootstrap you need to be aware of what works and what doesn’t. The bootstrap itself is a hard problem, more similar to the Manhattan project or the Moon shot.

If Donaldson believed that solvated polymer self-assembly molecular machine capabilities were equivalent to machine-phase capabilities he was mistaken.

However, above self-assembled molecular systems are absolutely required for the bootstrap of machine-phase.