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

Ray Foret Jr rforet7706 at comcast.net
Sun Feb 2 11:17:25 UTC 2014 

I can attest to the truth of what Mike says with respect to that which I shan’t name either.  I must admit, I had to laugh when I saw it and it caused me no end of personal amusement.

Now, as for me and my sleep, I suspect I may have this here thing as I often find myself awakening at 2:00 in the morning and returning to bed about 8:00 or 9 in the morning, thus nearly runing my day.  Here’s the weird part.  It ain’t always so with me.  During the summer months, it tends not to be so.  Come winter though, yep.


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 2, 2014, at 1:00 AM, Mike Freeman <k7uij at panix.com> wrote:

> Steve:
> 
> There is in my mind no question but that social interactions among the blind
> may well help to set their biological clocks. If this be so, then the tacit
> assumption that our social interactions do *not* keep us on-schedule raises
> a plethora of red flags, calling into question whether these studies are
> truly unbiased.
> 
> It reminds me of an article that appeared many years ago in a publication
> which shall remain nameless about a convention of a state affiliate of an
> organization which I shall also not name in which it was stated that
> arrangements had been made with convention hotel staff to have cooks on duty
> twenty-four hours a day so that blind persons who woke up at odd hours (not
> nowing that it was night) could assuage their hunger. <smile>
> 
> Yup, folks; that's what the article said!
> 
> Mike
> 
> 
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Steve
> Jacobson
> Sent: Saturday, February 01, 2014 10:18 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
> 
> I read this article, and I see nothing that shows that an attempt was made
> to determine to what degree the same misalignment of the biological clock
> exists in sighted people.  It seems to be assumed that if you see light that
> you don't have this problem.  That is what I have heard all along.  Yet, I
> have never seen any breakdown of the kinds of sleep disorders that sighted
> people have.  There is also a reference to social interactions helping to
> set the biological clock which also makes me wonder about control studies.
> If the assumption is that our social interactions are such that we are not
> kept on a schedule, then we need to know how sighted people with the same
> social interactions are affected.  This article does deal with the
> double-blind issue, but there is nothing here about any control groups or
> how sure we are that this does not occur in the general sighted population,
> especially with the same unemployment rate.  Do you have any other suggested
> readings?
> 
> Best regards,
> 
> Steve Jacobson
> 
> On Sat, 01 Feb 2014 18:49:50 -0600, Todor Fassl wrote:
> 
>> Mike,
> 
>> How in the world did you come to the conclusion that no double-blind 
>> studies have been done? That's *crazy*. The FDA doesn't approve drugs 
>> w/o double blind studies. No wonder people accuse you of not knowing 
>> what you are talking about.  This is so typical of your behaviour. You 
>> never seem to care whether you know  the first thing about a subject 
>> before shooting your mouth off. Do you realize how irresponsible you 
>> are being? This is a medical issue, What the f**k do you know about
> medicine?
> 
>> Here's a link to an article that specifically mentions a double blind 
>> study that was done:
>> http://www.sciencedaily.com/releases/2013/06/130617142045.htm
> 
> 
> 
> 
> 
> 
>> On 02/01/2014 05:37 PM, Mike Freeman 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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