[Blindtlk] non 24

[David Andrews]

Steve and Mike:

I know I am behind on this, ... but nevertheless, 
I would like to say a couple things.  First I was 
skeptical too.  However, after talking to a 
couple people in the study, who took the drug, I 
think non-24-hour is real, and some blind people 
have it.  I think that Vanda concentrated on us, 
because we are a "pure play" for the condition 
without lots of other variables.  I read 
somewhere that they think that the condition may 
impact seniors too, so I think this is their 
ultimate goal.  That is a much larger market than 
blind people, hence the willingness to spend 
money on us to prove the condition and the cure.

Dave

At 03:06 PM 1/6/2016, Mike Freeman via blindtlk wrote:
>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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         David Andrews and long white cane Harry.
E-Mail:  dandrews at visi.com or david.andrews at nfbnet.org