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

Sun Feb 2 11:53:47 UTC 2014

Good morning everyone,

    Show me the data! Blood and urinalysis are not usually done as a part of 
a sleep study. I don't want our resources and any contributions I give to 
the NFB going to support research of this kind when we have far bigger fish 
to fry! And then we wonder why more technology isn't accessible to us.

Peter Donahue

----- Original Message ----- 
From: "Loren Wakefield" <theweird1 at mediacombb.net>
To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 8:00 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimedat 
totally blind population

> Peter,
> This study is well done.  They had a test group and basically a 
> double-blind
> study.  People given the actual drug or placebo did not know which they 
> had.
> There were blood and urine analysis.  The same labs did the analysis.
> That's why we need to not put down this study.  Every group has its issues
> that are specific to that group.  We as blind are not immuneed to this 
> fact.
> I know people who fall in to this category and they tried for years to 
> work
> through it.  I don't know this, but it also to me seems to be somewhat 
> tied
> to age.
>
> Anyway, from where I sit, this is areal problem.  Just working and
> excercising will now do a thing for it.
>
> Loren
>
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Peter
> Donahue
> Sent: Saturday, February 01, 2014 5:14 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally 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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