[Blindtlk] non 24

Tue Jan 19 19:30:57 UTC 2016

With regard and without any respect to all of this pharmaceutical 
advertising, how is anyone supposed to know what components of a new 
drug or vaccine they are allergic to without having first been tested 
for such allergies?

On Tue, 19 Jan 2016, Mike Freeman via blindtlk wrote:

> Date: Tue, 19 Jan 2016 12:52:51
> From: Mike Freeman via blindtlk <blindtlk at nfbnet.org>
> To: 'Blind Talk Mailing List' <blindtlk at nfbnet.org>
> Cc: Mike Freeman <k7uij at panix.com>, 'David Andrews' <dandrews at visi.com>
> Subject: Re: [Blindtlk] non 24
> 
> Dave et al:
>
> I'm not saying Non-24 doesn't exist although I admit that I am skeptical as
> to how widespread it is. Leaving aside, though, the question of the
> existence or frequency of the syndrome, I consider the Vanda ad campaign
> reprehensible. If the ads simply said: "Call 800-bla-bla if you think you
> fit criteria for using hetlioz.", I wouldn't object. But advertisers seem
> incapable of conveying a simple message without sensationalizing the
> message.
>
> Mike Freeman
>
>
> -----Original Message-----
> From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of David
> Andrews via blindtlk
> Sent: Monday, January 18, 2016 8:15 PM
> To: Blind Talk Mailing List; Blind Talk Mailing List
> Cc: David Andrews
> Subject: Re: [Blindtlk] non 24
>
> 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. > > > >
>> _______________________________________________ >
>>  blindtlk mailing list > blindtlk at nfbnet.org >
>
>         David Andrews and long white cane Harry.
> E-Mail:  dandrews at visi.com or david.andrews at nfbnet.org
>
>
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