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

Sherry Gomes sherriola at gmail.com
Sat Feb 1 21:55:13 UTC 2014


I agree with you. I've had insomnia bouts from time to time, even when I
used to have light perception. The type of insomnia where you fall asleep
but have trouble staying that way. I don't sleep well on work nights but
sleep fine now on weekends. I don't think any of it ever had a thing to do
with me being blind. It either has to do with stress or not enough exercise
on work days, since I work from home. I think too many people who are blind
and have sleep trouble are being told it's because they are blind and maybe
the real problem with their sleep patterns isn't being addressed because
it's too easy for so-called sleep experts to blame it on blindness.

Sherry





-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Mike
Freeman
Sent: Saturday, February 01, 2014 2:49 PM
To: 'NFB Talk Mailing List'
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

Beth:

I absolutely agree with you! Although a few blind folks may have a sleep
disorder (I know of one such person), so do many sighted people and it is my
experience that when most blind persons with sleeping problems are put on a
regular schedule (i.e., no odd hours, working a nine-to-five day, etc.) and
get enough vigorous exercise, either on the job or as a program, their sleep
problems disappear. For example, I know a lady who used to have sleep
problems when she wasn't working. But when she started working a regular day
at a Head Start program, up and down all day with the kids, miracle of
miracles, her sleep problem disappeared!

So I'm very much a doubter. Trouble is that when I voice such skepticism
with much vigor, I get a lot of push-back from other blind people (both in
ACB and NFB),maintaining I don't know what I'm talking about.

Also, I know a couple of people who are participating in their so-called
studies and haven't received payment yet.

Can you say "snake-oil"?

Mike Freeman
 

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
beth.wright at mindspring.com
Sent: Saturday, February 01, 2014 1:33 PM
To: nfb-talk at nfbnet.org
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 s
 o-called disorder.

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