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

Sun Feb 2 06:18:20 UTC 2014

Peter,

My feeling is simply that we have to know more and go into the use of this drug carefully.  I might be a little uncomfortable with are association with this 
research without knowing more, but I am not enough of an expert to know to what degree this drug might help some people.

Best regards,

Steve Jacobson

On Sat, 1 Feb 2014 17:26:15 -0600, Peter Donahue wrote:

>Hello Steve and everyone,

>Thank you, thank you, thank you! I hope we will reconsider our support of 
>this research and call it out for the fraud it  is and we as an organization 
>distance ourselves from it.

>    Fortunately my experience with sleep centers weren't that bad. I was 
>treated like any other patient and no conclusions that my sleep issues were 
>connected to my blindness were reached. The lab tech knew that he had a 
>severe case of Sleep Apnea on his hands during my first night of the study 
>and demanded that I return so he could repeat the sleep study using the 
>Continuous Positive Airway Pressure (CPAP) machine. I connect myself to that 
>machine like it's my best buddy every night. It has made a significant 
>difference in the 10 + years I've been using it. I'm also aware of other 
>blind individuals who fortunately for them had positive experiences with 
>sleep labs and they were diagnosed with Sleep Apnea and other sleep 
>disorders. Their blindness had nothing to do with their sleep cycles. All 
>the best.

>Peter Donahue

>----- 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 4:23 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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>>
>>
>>
>>
>>
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