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

ckrugman at sbcglobal.net ckrugman at sbcglobal.net
Sun Feb 2 11:00:24 UTC 2014


now I know why I stopped listening to commercial radio a long time ago.
Chuck
----- Original Message ----- 
From: "Ray Foret Jr" <rforet7706 at comcast.net>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 3:54 PM
Subject: Re: [nfb-talk] A little concerned about this new drugaimed at 
totally blind population


> 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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>>
>>
>>
>>
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