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

Sun Feb 2 15:09:48 UTC 2014

How in the world do you know the company didn't rule out other sleep 
disorders?

On 02/02/2014 04:47 AM, ckrugman at sbcglobal.net wrote:
> 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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