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

Sun Feb 2 05:59:57 UTC 2014

Mike,

Can you refer me to any studies that use a control group rather than comparing the pills with a non active pill?  I have not seen a study that attemps to use 
a control group who is sighted but shares other characteristics with us such as high unemployment as well as certain other stress.  If that has been done, I 
would feel some better about this.  
Again, I don't claim to know that there is not such a disorder, I am just uneasy about the way this has been approached over the past thirty years.  

Best regards,

Steve Jacobson

On Sat, 1 Feb 2014 19:01:43 -0500, Michael Bullis wrote:

> I have been following the studies on this subject for almost 40 years
>now. It is a real and valid problem for some people who have little or
>no light perception. There have been many studies and much validation.
>Although I think the advertisements are a bit stupid, the problem they
>are trying to solve, and it would appear, that the drug they're trying
>to use, does work.

>Sent from my iPhone

>> On Feb 1, 2014, at 6:39 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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