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

[David Andrews]

Ok, enough!  This is a personal attack and against all our 
rules.  You can point to the study and tell Mike you believe him to 
be wrong without attacking him.

Unfortunately, I think most everyone in this whole thing, including 
Vanda Pharmaseuticals, overstates things.  Let's step back and take a 
deep breath.

David Andrews, Moderator

At 06:49 PM 2/1/2014, you 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.