[nfb-talk] Vanda, what is all the fuss about?
Ray Foret Jr
rforet7706 at comcast.net
Mon Feb 3 21:39:34 UTC 2014
From which, Peter, I gather that you were the victim of the insendent? Sounds nasty what ever it was.
Sent from my Mac, the only computer with full accessibility for the blind built-in!
Sincerely,
The Constantly Barefooted Ray, still a very happy Mac and Iphone 5 user!
On Feb 3, 2014, at 3:31 PM, Peter Donahue <pdonahue2 at satx.rr.com> wrote:
> Good afternoon Chris and everyone,
>
> The nagging question you should ask your friends is whether or not they underwent sleep studies before it was determined that the issue was Non 24 Hour Syndrome or whatever they call it. Having lived with an undiagnosed sleep disorder for years, one that was partly responsible for an incident that occurred at a past national convention in which I was involved if these folks have any sense of respect for individuals and a recognition that blind people also suffer from sleep-related disorders having nothing to do with their blindness your friends should have undergone a sleep study before it was determined that Non 24 is their issue.
>
> I'm warning everyone now that if there is ever another situation like the one I found myself in in 2001 and someone is severely injured or killed and the person who committed this act is not only expelled from the NFB and lands in prison it's later discovered that an undiagnosed sleep disorder is partly to blame for these events they'll have the good folks at Vanda and their crappy publicity concerning the notion that all blind people suffer from Non 24 Hour Disorder and the NFB for not demanding to know if those doing this research performed sleep studies on their subjects to catch common sleep disorders before determining that Non 24 is the issue we will have failed the blind community miserably! I believe there should be some resolutions acted upon at this year's national convention calling Vanda out on their adds and that we demand that any blind individual believed to suffer from Non 24 Hour Disorder undergo a sleep study to rule out other sleep-related problems.
>
> Peter Donahue
>
> ----- Original Message ----- From: "Chris Nusbaum" <dotkid.nusbaum at gmail.com>
> To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
> Sent: Monday, February 03, 2014 2:35 PM
> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>
>
>> Karen,
>>
>> It's understandable that you feel the ad is making the listener believe that all blind people suffer from Non-24. However, this does not detract from its being a real problem faced by *some* blind people, particularly those who are totally blind with no light perception. I myself experienced the symptoms of Non-24 for a long time, though I've somehow outgrown them now. Note that this was before Vanda began its research on Non-24 and nobody had a name for it--at least so far as I was aware.
>>
>> There are some blind people who continue to suffer from this disorder today. I know two of them very closely. Indeed, there are some who have difficulty staying awake at work or falling asleep at night. If this is true, then, what's the harm in the development of a drug which would cure this? Perhaps the implied message of the commercials was a little skewed, but I don't think we should discourage this research because of it.
>>
>> Chris
>>
>> -----Original Message-----
>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Karen Rose
>> Sent: Sunday, February 02, 2014 11:00 PM
>> To: NFB Talk Mailing List
>> Cc: NFB Talk Mailing List; <mike at michaelhingson.com>
>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>
>> Chris – they are portraying blind people as unable to stay awake and concentrate at work throughout the day. I am a psychotherapist private practice. The last thing I need my list is to help people believe that I cannot stay away and thinking of them. But Karen
>>
>> Sent from my iPhone
>>
>>> On Feb 2, 2014, at 6:34 PM, "Chris Nusbaum" <dotkid.nusbaum at gmail.com> wrote:
>>>
>>> Mike and Others,
>>>
>>> I must say that I am confused as to the apparent problem in the Vanda
>>> ads. I have only heard the radio ads, which began in a way which
>>> concerned me slightly. The supposedly blind man who did the voiceover
>>> said: "You can't see me because of radio, and I can't see you because I'm totally blind."
>>> However, he added immediately after this statement: "I don't let my
>>> blindness stop me." I believe in a positive portrayal of blindness in
>>> the media as much as the next Federationist, but I am puzzled as to
>>> what the problem was in the commercials. Clarification, please?
>>>
>>> Chris
>>>
>>> -----Original Message-----
>>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>> Michael Hingson
>>> Sent: Sunday, February 02, 2014 6:57 PM
>>> To: 'NFB Talk Mailing List'
>>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>>
>>> Understandable.
>>>
>>> -----Original Message-----
>>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Karen
>>> Rose
>>> Sent: Sunday, February 02, 2014 03:05 PM
>>> To: mike at michaelhingson.com; NFB Talk Mailing List
>>> Cc: NFB Talk Mailing List
>>> Subject: Re: [nfb-talk] Vanda, what is all the fuss about?
>>>
>>> Although I do not have this disorder I see no problem with their drug.
>>> My beef is with their advertising agency
>>>
>>> Sent from my iPhone
>>>
>>>> On Feb 2, 2014, at 11:41 AM, "Michael Hingson"
>>>> <Mike at michaelhingson.com>
>>> wrote:
>>>>
>>>> Hi all,
>>>>
>>>> I am coming into this discussion a bit late and I have tried to read
>>>> many of the back posts before responding.
>>>>
>>>> I agree it is unfortunate that the adds aren't as positive and strong
>>>> concerning blindness as we would like. I must puzzle over this since
>>>> the NFB has been closely interacting with Vanda for more than three years.
>>>>
>>>> As for the testing and studies Vanda asked for volunteers for nearly
>>>> two years. They wanted volunteers to test the drug in a double blind
>>> study.
>>>> They got many volunteers and over a year ago Vanda announced that
>>>> they had found a good positive effect introduced by their product.
>>>>
>>>> Now Vanda is moving forward and has FDA approval under the prescribed
>>>> process for that to occur. Where has everyone been? The information
>>>> for all this has been on these lists as well as many other list serves.
>>>>
>>>> Vanda could do more to help show a positive image about blindness as
>>>> they create their adds. So nicely contact them and make positive
>>> suggestions.
>>>> Also, contact our National office and suggest improvements, but
>>>> please recognize that Vanda has indeed proven a hypothesis it
>>>> formulated and as a result it created a product which can help blind
>>>> people who have sleep issues. Keep in mind that this product, as
>>>> with most blindness related things, will have a limited market, but
>>>> Vanda certainly determined that its product was worth creating or it
>>>> wouldn't have done
>>> so.
>>>>
>>>>
>>>> Best,
>>>>
>>>>
>>>> Michael Hingson
>>>>
>>>> -----Original Message-----
>>>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>>> David Andrews
>>>> Sent: Sunday, February 02, 2014 11:00 AM
>>>> To: NFB Talk Mailing List
>>>> Subject: Re: [nfb-talk] A little concerned about this new drug aimed
>>>> at totally blind population
>>>>
>>>> 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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