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

Sun Feb 2 10:47:44 UTC 2014

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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