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

Sun Feb 2 00:04:35 UTC 2014

That'll do it for a lot of people. (grin)

I, on the other hand, can schlep down several cups of coffee and go right to
sleep.

Weird, eh?

Mike

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Larry D.
Keeler
Sent: Saturday, February 01, 2014 3:29 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
totally blind population

My sleeping issue is that I love caffine! Coffee, pop and chocolate! 
Yummm!!!
----- Original Message -----
From: "Steve Jacobson" <steve.jacobson at visi.com>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 5:23 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
totally blind population

> Hi,
>
> I have also been uneasy about all of this, but I recognize I don't 
> know all there is to know about all this.  Because One is blind and 
> doesn't seem to have a sleep problem like this doesn't mean nobody does.
> Because ablind person has a sleep disorder doesn't mean it is related 
> to blindness, either.  I have seen firsthand where sleep clinics 
> dealing with a blind person assume the problems are related to 
> blindness without running normal tests.  I've seen doctors actually 
> get excited like little kids when they think they have a blind person with
a sleep problem.
> It also appears that the drug Vanda has has now been approved and was 
> put on a sort of fast track because it deals with a rare and severe 
> condition.  Blind people will have a disservice done if this drug is 
> prescribed before a thorough evaluation is performed to analyze 
> serious sleep disorders.  I also think that painting blind people in 
> their mass-marketing efforts as struggling to stay awake all day is 
> not helpful in our efforts to get jobs.  There have been other 
> marketing efforts, though, where people have not been paid, so I don't 
> know if that is Vanda or not.
>
>
> I will forward the note I received regarding the approval of this drug. 
> I'm afraid I had to laugh a little when I saw that one side-effect is 
> drousiness.  I want to be clear, though, that I do not claim that 
> there are not people with serious disorders who may be helped.  I also 
> can't say that I know for certain that this particular disorder 
> doesn't exist.  I just think we need to be sure that we are not 
> stereotyped into this disorder in a way that leaves other disorders 
> undiagnosed.  We also need to recognize that for such research to be 
> real accurate, a control group who is not blind but shares other 
> similarities, such as the same unemployment rate, would need to have 
> been used, and I have not been convinced that was done in the reading 
> I've done, but I don't claim I've read every word of every study.
>
> Best regards,
>
> Steve Jacobson
>
> On Sat, 1 Feb 2014 13:48:39 -0800, Mike Freeman 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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>
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