[Blindtlk] non 24

Thu Jan 7 21:59:37 UTC 2016

Hi Mike,
I agree with you about how Vanda seems to have put a lot into marketing to a very small population. Could it be that maybe Vanda is, in this case, putting altruism above profits? That would be an oddity for sure in the Corporate States of America.
But I do disagree with your second point. Why should we be horrified that there's a blindness-related condition that could cause one to fall asleep at work, at home or anywhere else? Frankly, I’m much more horrified that it's possible an employer would refuse to hire us just because he or she saw a Vanda add for non 24 sufferers. That's immoral in my view and ought to be illegal. Instead of pointing the finger at Vanda, we ought to be pointing the finger at any employer who would use this or any other of a number of excuses not to hire us.
Bob Hachey 

-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Mike Freeman via blindtlk
Sent: Wednesday, January 06, 2016 4:07 PM
To: Blind Talk Mailing List
Cc: Mike Freeman
Subject: Re: [Blindtlk] non 24

Steve:

I completely agree with you. I find it somewhat odd that the pharmaceutical firm put so much effort into advertising and marketing to such a small population. Additionally, I find it horrifying when I hear ads purporting to come from blind people which say that a blindness – related illness causes them to fall asleep at work. What an example of the capability of the blind!!!

Mike Freeman

> On Jan 6, 2016, at 11:49, Steve Jacobson via blindtlk <blindtlk at nfbnet.org> wrote:
> 
> Gary,
> 
> For a long time, I've had a very negative reaction to sleep study 
> conclusions that involve blind people.  In the past, there has been a 
> history of even educated people thinking of blindness as living in the 
> dark and feeling that there must be negative effects of constant 
> darkness.  It seemed sometimes that they would go to great lengths to 
> prove what they already knew just had to be true.  Over the years, I 
> have had to adjust my original position some partly because people I 
> trust, such as yourself, have felt that there may be a connection 
> between blindness and sleep irregularities.  Still, I read statements 
> even in this current discussion that raise red flags to me, and there 
> are issues with the ad campaigns that really puzzle me.  Perhaps some 
> of the questions I have are answered somewhere and I just have not gotten to them.  Here are some examples.
> 
> There always seems to be a few people who use the logic "I am blind, I 
> have a sleep problem, therefore blind people have a sleep problem."  
> It isn't put that simply or directly, but there is often a sense that 
> any sleep problem we have must be connected to blindness.  I find 
> myself wondering if there is really an understanding of the depths of 
> sleep problems that exist among sighted people.  I find that more than 
> once when the subject comes up that persons who are sighted 
> acknowledge sleep difficulties.  I know of sighted people who have 
> fallen asleep at their desks, for example.  When one looks at the 
> marketing of sleeping aids, clearly sleep is a fairly widespread 
> problem.  Of course, I am not claiming that this disproves Non 24, but it means we need to keep what we experience in perspective.
> 
> It is my understanding that non 24 can apparently be diagnosed by the 
> presence of a chemical in one's blood.  Therefore, I accept that this 
> condition exists and can be diagnosed accurately.  However, given that 
> sleep problems are encountered by sighted people, and given that it is 
> likely that many of them do not have non 24, how can it be assumed 
> that if a blind person has non-24 that it is the only sleep issue?  Do 
> we know that the Vanda drug might not be correcting other issues, 
> issues that sighted people might have, for example?  In other words, 
> whether the Vanda drug works or not, how do we know that Non 24 is 
> playing the major role that is being publicized?
> 
> We know that each of us can react differently to many things.  If we 
> have non-24, how is it determined whether the symptoms justify 
> treatment?  Many Gary,
> 
> For a long time, I've had a very negative reaction to sleep study 
> conclusions that involve blind people.  In the past, there has been a 
> history of even educated people thinking of blindness as living in the 
> dark and feeling that there must be negative effects of constant 
> darkness.  It seemed sometimes that they would go to great lengths to 
> prove what they already knew just had to be true.  Over the years, I 
> have had to adjust my original position some partly because people I 
> trust, such as yourself, have felt that there may be a connection 
> between blindness and sleep irregularities.  Still, I read statements 
> even in this current discussion that raise red flags to me, and there 
> are issues with the ad campaigns that really puzzle me.  Perhaps some 
> of the questions I have are answered somewhere and I just have not gotten to them.  Here are some examples.
> 
> There always seems to be a few people who use the logic "I am blind, I 
> have a sleep problem, therefore blind people have a sleep problem."  
> It isn't put that simply or directly, but there is often a sense that 
> any sleep problem we have must be connected to blindness.  I find 
> myself wondering if there is really an understanding of the depths of 
> sleep problems that exist among sighted people.  I find that more than 
> once when the subject comes up that persons who are sighted 
> acknowledge sleep difficulties.  I know of sighted people who have 
> fallen asleep at their desks, for example.  When one looks at the 
> marketing of sleeping aids, clearly sleep is a fairly widespread 
> problem.  Of course, I am not claiming that this disproves Non 24, but it means we need to keep what we experience in perspective.
> 
> It is my understanding that non 24 can apparently be diagnosed by the 
> presence of a chemical in one's blood.  Therefore, I accept that this 
> condition exists and can be diagnosed accurately.  However, given that 
> sleep problems are encountered by sighted people, and given that it is 
> likely that many of them do not have non 24, how can it be assumed 
> that if a blind person has non-24 that it is the only sleep issue?  Do 
> we know that the Vanda drug might not be correcting other issues, 
> issues that sighted people might have, for example?  In other words, 
> whether the Vanda drug works or not, how do we know that Non 24 is 
> playing the major role that is being publicized?
> 
> We know that each of us can react differently to many things.  If we 
> have non-24, how is it determined whether the symptoms justify 
> treatment?  Many people have sleep difficulties that they address 
> successfully through various means, and it would seem reasonable to 
> assume that in some cases other approaches might be adequate.  How is this accommodated?
> 
> We have become polarized to some degree around this issue.  Those of 
> us who are somewhat skeptical are often seen as clearly not having a 
> problem and therefore not understanding that others may not be so 
> fortunate.  The questions we raise are discounted.  Well, I don't 
> raise questions to prove that anyone does not have a sleep problem.  I 
> also do not maintain that the Vanda drug may not help some people, 
> maybe even many people.  What concerns me is that an environment is 
> being created that more or less funnels people into this particular 
> solution when there are valid questions.  Also, the picture painted by 
> the ad campaign is pretty bleak.  I just don't see 70% of us 
> struggling to stay awake at our desks even though some of us do from 
> time to time.  I just think we need more answers than we have, and 
> they need to come from objective sources that don't stand to gain or loose depending upon the answers.
> 
> To those who have found the Vanda solution to be the answer and can 
> afford it, I am sincerely glad it has worked out.  Nothing said here 
> is meant to deny the fact that this drug may be a welcome solution in 
> some or even many cases.  It just seems to me that there are 
> unanswered questions, and a tendency to jump on the bandwagon while 
> remaining silent about the ad campaign.
> 
> Best regards,
> 
> Steve Jacobson
> 
> -----Original Message-----
> From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Gary 
> Wunder via blindtlk
> Sent: Tuesday, January 05, 2016 5:36 PM
> To: 'Blind Talk Mailing List' <blindtlk at nfbnet.org>
> Cc: Gary Wunder <gwunder at earthlink.net>
> Subject: Re: [Blindtlk] non 24
> 
> I have enjoyed reading the comments about non-24, and when I 1st heard 
> about the efforts of a pharmaceutical company to market to blind 
> people, I was suspicious. I think I was also a bit defensive, assuming 
> that the worst would happen.
> 
> I suspect that I suffer from non-24. There are times when I have to 
> work very hard to stay awake, even when I find things around me to be 
> interesting and thought-provoking. There are times when at 4 o'clock 
> in the morning I am totally wide-awake and mad about it. Then I will 
> be walking through a store or working at my desk or even exercising, 
> and I find that I am exceedingly tired. This suggests to me that I do 
> have a body clock and that periodically that body clock gets off.
> 
> I relate to the comments about being embarrassed while at work and 
> unintentionally falling asleep. It does not reflect well on any 
> employee when this happens, and I admit that more than once I have 
> been embarrassed about nodding off at times when I was paid to be 
> awake. I have developed a number of strategies for combating this, but 
> I can't claim that they work 100% of the time. If I catch myself in 
> time, I can always stand up, pace, do toe touches, or engage in other 
> activities that I can blame on needing to stretch my legs or my sore 
> back. Sometimes they too require attention, but it is more likely that I am trying to ensure that I stay awake.
> 
> I don't know that this adds anything, but I do believe that the 
> subject is important enough that I am likely to put it on our 
> convention agenda here in Missouri. If non-24 is real, we should not 
> try to run from it. If the marketing is not what it should be, we should not run from that either.
> 
> 
> 
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