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

[Todor Fassl]

It is not a personal attack. Telling someone they should get the facts 
before they go on the attack themselves is not a personal attack. 
Mike    called that company  "snake oil" salesmen. That  is simply 
ridiculously irresponsible and there is nothing wrong with saying so.

On 02/01/2014 06:57 PM, David Andrews wrote:
> 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.
>
>
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