[nfb-talk] A little concerned about this new drug aimed attotally blind population

[Mike Freeman]

We don't know that Vanda didn't require such studies ... although I rather
doubt it.

Mike


-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
ckrugman at sbcglobal.net
Sent: Sunday, February 02, 2014 2:48 AM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed
attotally blind population

this is a very valid pint as I did go through a sleep study a few years back
and found that I did have some level of sleep apnea. It is surprising that
the company would not require a general study to measure base lines and rule
out other type of sleep disorders and medical conditions.
Chuck
----- Original Message -----
From: "Peter Donahue" <pdonahue2 at satx.rr.com>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 3:13 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimed
attotally blind population


> Hello Beth and everyone,
>
>    And to the best of my knowledge they're not first putting their 
> test subjects through baseline sleep studies to rule out legitimate 
> sleep disorders before determining that the issue is connected with 
> the sleep-wake cycle. What I fear is happening is that these folks are 
> convinced that one's blindness affects our ability to sleep normally 
> ignoring the possibility that these blind individuals may have 
> bonafied sleep disorders having nothing to do with their blindness. As 
> long as blind individuals and the NFB continue to be suckers for this 
> kind of research they'll keep on doing it.
>
>    I know first hand what can happen when a sleep disorder goes 
> undiagnosed for years. When I was growing up folks thought that my 
> blindness was affecting my sleeping. It took an unfortunate incident I 
> was involved in during our 2001 National Convention that eventually 
> lead to my being diagnosed with the worst case of Obstructive Sleep 
> Apnea (OSA) imaginable!It's very possible that had the Sleep Apnea 
> been diagnosed sooner the incident I referred to above and other 
> difficulties I had through the years due to lack of sleep could have 
> been prevented. I fear that other blind individuals are being sent down
that same road.
>
>    The NFB has had a long history of scrutinizing so-called research 
> of this kind. I fear we fell down on the job with this one. If these 
> people were conducting this research responsively they would require 
> their subjects to undergo sleep studies before investigating 
> sleep-wake issues that may or may not be directly connected to 
> blindness. These people have been frighteningly silent on this point. 
> Having experienced what can happen when a sleep disorder goes 
> undiagnosed neither of us want any part of such pseudo research and 
> hate the thought of drug companies getting rich at our expense. We 
> will be glad when the NFB disassociates from what these people are 
> doing and turns its attention to more important matters concerning our
ability to live independent and productive lives.
>
> Peter Donahue
>
>
>
>
> ----- Original Message -----
> From: <beth.wright at mindspring.com>
> To: <nfb-talk at nfbnet.org>
> Sent: Saturday, February 01, 2014 3:33 PM
> 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 so-called disorder.
>>
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>
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