[nfb-talk] A little concerned about this new drug aimedat totally blind population

Sat Feb 1 23:28:35 UTC 2014

My sleeping issue is that I love caffine! Coffee, pop and chocolate! 
Yummm!!!
----- Original Message ----- 
From: "Steve Jacobson" <steve.jacobson at visi.com>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 5:23 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimedat 
totally blind population


> Hi,
>
> I have also been uneasy about all of this, but I recognize I don't know 
> all there is to know about all this.  Because One is blind and doesn't 
> seem to have a sleep problem like this doesn't mean nobody does.
> Because ablind person has a sleep disorder doesn't mean it is related to 
> blindness, either.  I have seen firsthand where sleep clinics dealing with 
> a blind person assume the problems are related to blindness
> without running normal tests.  I've seen doctors actually get excited like 
> little kids when they think they have a blind person with a sleep problem. 
> It also appears that the drug Vanda has has now been
> approved and was put on a sort of fast track because it deals with a rare 
> and severe condition.  Blind people will have a disservice done if this 
> drug is prescribed before a thorough evaluation is performed to
> analyze serious sleep disorders.  I also think that painting blind people 
> in their mass-marketing efforts as struggling to stay awake all day is not 
> helpful in our efforts to get jobs.  There have been other marketing
> efforts, though, where people have not been paid, so I don't know if that 
> is Vanda or not.
>
>
> I will forward the note I received regarding the approval of this drug. 
> I'm afraid I had to laugh a little when I saw that one side-effect is 
> drousiness.  I want to be clear, though, that I do not claim that there 
> are
> not people with serious disorders who may be helped.  I also can't say 
> that I know for certain that this particular disorder doesn't exist.  I 
> just think we need to be sure that we are not stereotyped into this
> disorder in a way that leaves other disorders undiagnosed.  We also need 
> to recognize that for such research to be real accurate, a control group 
> who is not blind but shares other similarities, such as the same
> unemployment rate, would need to have been used, and I have not been 
> convinced that was done in the reading I've done, but I don't claim I've 
> read every word of every study.
>
> Best regards,
>
> Steve Jacobson
>
> On Sat, 1 Feb 2014 13:48:39 -0800, Mike Freeman wrote:
>
>>Beth:
>
>>I absolutely agree with you! Although a few blind folks may have a sleep
>>disorder (I know of one such person), so do many sighted people and it is 
>>my
>>experience that when most blind persons with sleeping problems are put on 
>>a
>>regular schedule (i.e., no odd hours, working a nine-to-five day, etc.) 
>>and
>>get enough vigorous exercise, either on the job or as a program, their 
>>sleep
>>problems disappear. For example, I know a lady who used to have sleep
>>problems when she wasn't working. But when she started working a regular 
>>day
>>at a Head Start program, up and down all day with the kids, miracle of
>>miracles, her sleep problem disappeared!
>
>>So I'm very much a doubter. Trouble is that when I voice such skepticism
>>with much vigor, I get a lot of push-back from other blind people (both in
>>ACB and NFB),maintaining I don't know what I'm talking about.
>
>>Also, I know a couple of people who are participating in their so-called
>>studies and haven't received payment yet.
>
>>Can you say "snake-oil"?
>
>>Mike Freeman
>>
>
>>-----Original Message-----
>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>beth.wright at mindspring.com
>>Sent: Saturday, February 01, 2014 1:33 PM
>>To: nfb-talk at nfbnet.org
>>Subject: [nfb-talk] A little concerned about this new drug aimed at 
>>totally
>>blind population
>
>>Hi, folks. Just wanted to see if I could get the scoop on this new drug
>>that's supposed to correct the sleep/wake cycles in people who are totally
>>blind. I'm totally blind myself, but haven't had any problems with my 
>>sleep
>>patterns, so, even though I've seen lots of ads for it on 
>>blindness-related
>>web sites and know that they've been a major sponsor at our conventions, I
>>wasn't all that concerned about it one way or the other. As far as I can
>>tell, their ads have been pretty tastelike and their recruitment 
>>techniques,
>>fairly low key. Lately, though, they seem to be ramping up the message. 
>>From
>>what I can tell, they now seem to be claiming that this sleep/wake thing 
>>is
>>a serious problem, affcting around eighty thousand people in the US, the
>>majority ofthe totally-blind population. I think that's deceptive. I know
>>that they need to reach the largest number of people possible in order to
>>make a sufficient profit, but I don't think they should exaggerate the
>>seriousness of this s
>> o-called disorder.
>
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>
>
>
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