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

Sun Feb 2 02:18:47 UTC 2014

jMike,  
To be fair about this, my wife has been a participant and has had fantastic
results with this.  I could not participate because of other health issues
and having to be on other meds.  I can assure you though, this research was
very thourough.  

Loren 

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Mike
Freeman
Sent: Saturday, February 01, 2014 6:11 PM
To: 'NFB Talk Mailing List'
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

Lauren:

None of these pronouncements are official NFB policy; they are merely some
NFB members expressing their skepticism and/or expressing unease at the
tenor of some of Vanda Pharmaceutical's ads or (in my case) wondering why
some test participants haven't been paid yet.

Rest easy.

Mike

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Loren
Wakefield
Sent: Saturday, February 01, 2014 3:24 PM
To: 'NFB Talk Mailing List'
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

I am going to go against the flow here.  To say this is not a problem is for
lack of a nicer word, stupid .  If you have it, you just cannot function
when you are in the worst of it.  If the NFB is against this known fact, it
should give back the funds it got for the research from it.  My wife and I
both took the survey; so,I know they received at least $50.00 from it.  If
it does not affect you, count your blessings.  It's more than not being able
to stay on a regular sleeping schedule.  I'm sorry if this sounds wrong.
But this is sounding like because we are members of NFB, we are super humans
and can't be bothered by anything.  I know way to many in the NFB to think
that we do not care about our fellow human beings.  If you are not currently
bothered by it, be glad and pray you never are.  

Loren  

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of David
Andrews
Sent: Saturday, February 01, 2014 5:05 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

hMike:

I won't say you don't know what you are talking about -- but most of your,
and other people's info is anecdotal.  I have a 5 day a week job, and make
it in most days (smile,) but have sleep problems.  So, I am sure you are
right in some cases, but not all.

Dave

At 03:48 PM 2/1/2014, you wrote:
>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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