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

Sat Feb 1 23:26:15 UTC 2014

Hello Steve and everyone,

Thank you, thank you, thank you! I hope we will reconsider our support of 
this research and call it out for the fraud it  is and we as an organization 
distance ourselves from it.

    Fortunately my experience with sleep centers weren't that bad. I was 
treated like any other patient and no conclusions that my sleep issues were 
connected to my blindness were reached. The lab tech knew that he had a 
severe case of Sleep Apnea on his hands during my first night of the study 
and demanded that I return so he could repeat the sleep study using the 
Continuous Positive Airway Pressure (CPAP) machine. I connect myself to that 
machine like it's my best buddy every night. It has made a significant 
difference in the 10 + years I've been using it. I'm also aware of other 
blind individuals who fortunately for them had positive experiences with 
sleep labs and they were diagnosed with Sleep Apnea and other sleep 
disorders. Their blindness had nothing to do with their sleep cycles. All 
the best.

Peter Donahue

----- 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 4:23 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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