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

[Peter Donahue]

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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