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

Sat Feb 1 23:54:42 UTC 2014

Oh please man, I heard those adds myself on the radio.  tisk tisk tisk.

Sent from my Mac, the only computer with full accessibility for the blind built-in!

Sincerely,
The Constantly Barefooted Ray, still a very happy Mac and Iphone 5 user!

On Feb 1, 2014, at 5:37 PM, Mike Freeman <k7uij at panix.com> wrote:

> Steve:
> 
> Obviously, I agree with you on all counts.
> 
> In addition, while at the national Center, I heard a number of ads pushing
> hetlioz and I found it amusing that they start out with a supposedly blind
> person saying: "You can't see me because this is radio. I can't see you
> because I'm totally blind." AS if he wasn't also on the radio!
> 
> While not denying that some may find the drug helpful, I must say that, like
> you, I do not think nearly enough work has been done using controls and I'd
> bet good money that no pluscebo-controlled, double-blind studies have been
> done.
> 
> Mike Freeman
> 
> 
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Steve
> Jacobson
> Sent: Saturday, February 01, 2014 2:24 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> 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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