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

Todor Fassl fassl.tod at gmail.com
Sun Feb 2 20:54:40 UTC 2014


Reallly? How so?


On 02/02/2014 12:59 PM, David Andrews wrote:
> You may consider the ads to be trivial -- but many here will not.  
> They reflect how society feels about us, and they perpetuate 
> antequated notions of blindness and blind people.
>
> Dave
>
> At 12:36 PM 2/2/2014, you wrote:
>> 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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