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

Sun Feb 2 18:36:12 UTC 2014

You'll have to forgive me for thinking you might not be looking at this 
issue with complete objectivity .  I can't imagine how I got the idea 
that you held antipathy for  Vanda. I guess maybe I took it wrong when 
    you called them snake oil salesmen.

And, no, I do not have to admit  their ads take us for fools. That's a 
subjective issue that I want no part of. If you want to gripe about 
their ads, go ahead.  It wouldn't occur to me to care about something so 
trivial.

On 02/02/2014 09:59 AM, Mike Freeman wrote:
> Hey, man! Tone down the rhetoric.
>
> If you read carefully one of my last messages, I admitted to you that I
> stood corrected and that one of the articles did say they did a double-blind
> study.
>
> Please do not confuse skepticism with antipathy. I don't think any of us
> begrudge  Vanda Pharmaceuticals the right to develop a non-24 drug. But
> their advertising hype tends to prejudice some of us against their research
> in that some of us think that a truly scientific study wouldn't appeal as
> much to problems of the blind in terms that are all-too-familiar to many of
> us.
>
> Those of us with diabetes are unfortunately very familiar with research hype
> -- "they" have been going to have a cure for Type 1 diabetes "just around
> the corner" for the past half-century, for example. And there has been
> research here in the Pacific Northwest on the non-24 problem since something
> like 1985. I remember a doctor from Oregon State or the University of Oregon
> writing to Dr. Jernigan asking what we thought of such research about that
> time and he replied, in effect, that if the research was carefully done, NFB
> would have no problem with it. IMO this is still what many of us think.
>
> But you'll have to admit that their advertisements seem to take us for fools
> -- not an auspicious way to win friends and influence people.
>
> Mike
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Todor Fassl
> Sent: Sunday, February 02, 2014 7:08 AM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
>
> 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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>>>
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