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

Sun Feb 2 18:54:22 UTC 2014

Hmmm... It sure seems to me that the hostility on this list toward Vanda 
is way out of proportion to reality.  The company may have found a way 
to help thousands of people. Yet they are being absolutely trashed on 
this list. It makes no sense. An I am not buying the idea that this  is  
just an example of healthy skepticism.

Well, maybe it will turn into that. But it's not as if people have 
stopped accusing Vanda of  fraud , exaggeration, and being unscientific 
in their research.  People don't seem to think there is anything wrong 
with those accusations. But that is way, way different than being 
skeptical. Healthy skepticism is saying it was only one study and had 
only a few dozen participants. You don't have to imply that Vanda did 
anything wrong to be skeptical.

On 02/02/2014 10:53 AM, David Andrews wrote:
> He already admitted he was wrong about the double blind study -- so 
> back off a little.
>
> The factor, that you might not be acknowledging, is the countless 
> times that blind people have been the guinea pigs in one study or 
> another, and the numerous scientists who come to us and say they have 
> this or that solution to our problems.  After a while people get 
> suspicious and cynical.
>
> Personally I think Vanda has identified a real problem, and come up 
> with a solution, but like many before them, they are overstating the 
> problem, and the benefits of their solution.  This is much of the 
> reaction you are seeing.
>
> Dave
>
> At 09:07 AM 2/2/2014, you wrote:
>> Mike,
>>
>> I asked you a question. How in the world did you come to the 
>> conclusion that the FDA approved this drug without a double blind 
>> study? That's an important question. You should try to figure out 
>> what caused you to make such a ridiculous mistake. Maybe you're not 
>> looking at this issue objectively. Maybe you should try to be more 
>> careful. That's always important but even more so when dealing with 
>> medical issues.
>>
>> All this stuff below is nothing but a smoke screen you're throwing up 
>> to avoid admitting you shot your mouth off on a topic you know 
>> nothing about. Now, get out there, do some research about this drug, 
>> and then get back to us if you still have something to say.
>>
>>
>>
>> On 02/02/2014 12:31 AM, Mike Freeman wrote:
>>> Sir:
>>>
>>> I sit corrected about a double-blind study and am glad to be informed.
>>> However, I assure you that FDA isn't always as careful as you might 
>>> believe.
>>> The announcement itself gives some indication of this in that FDA
>>> fast-tracked experimental use of this drug, presumably because of the
>>> blindness angle. And be assured that until various specialists in
>>> statistical medicine and epidemiology insisted otherwise, the 
>>> original trial
>>> of the Salk poleo vaccine was going to be a single-blind, not a 
>>> double-blind
>>> study. But wiser heads prevailed so it was a full pluscebo-controlled,
>>> double-blind study with something like fifty thousand participants 
>>> -- enough
>>> to give truly valid statistical results.
>>>
>>> And way back in 1936,Dilantin was fast-tracked for epilepsy control 
>>> because
>>> at that time, it was about the only drug other than phenobarbital 
>>> that was
>>> effective.
>>>
>>> And can you say viox or celibrex? Or Avandia, which was originally 
>>> approved,
>>> then got a strong warning label and now has been shown largely not 
>>> to merit
>>> that label?
>>>
>>> We're all (including scientists and medical personnel) human.
>>>
>>> Cheers!
>>>
>>> Mike
>>>
>>>
>>> -----Original Message-----
>>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of 
>>> Todor Fassl
>>> Sent: Saturday, February 01, 2014 4:50 PM
>>> To: NFB Talk Mailing List
>>> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
>>> totally blind population
>>>
>>> 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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