[Blindtlk] non 24

[Mike Freeman]

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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