[nfb-talk] nfb-talk Digest, Vol 69, Issue 6

Sun Feb 2 06:37:44 UTC 2014

Hello:
I am a professional in the mental health community. I would like to
say that many people, I think I am one, have issues with depression
and some of its symptoms, especially in the winter. It could come down
to individual Sarkadian Rithems, but I am not sure. light, especially
sun light does make a great deal of difference for some. I wouldn't
condemn the studies before the final word is out. I too think that
occasionally we NFB folks do not allow for others who have different
experiences to count. I am not a super hero, and certainly struggle in
many ways, not only related to my blindness. Lets just see, and let
time and circumstance indicate if this drug is of any use. Some times
I feel frustrated because some of my issues don't even involve my
blindness. However, having stated this, I can say that from a clinical
perspective, depression and all of its varied symptoms does affect
many who are also blind. Perhaps this has more to do with social
attitudes, mis-understandings, family issues, economic struggles, not
being validated as equal, I am not sure, but never-the-less, if a
pharmaceutical drug can help the many who struggle, especially in the
winter months, then let us wait and see. (please excuse the spelling,
no spell check on Google).
What is good about our organization is that using its tenants to
educate and professionally assist clients who have disabilities does
really help to empower many who have felt lost, unconnected, and were
previously believers of societies mistruths. Seeing light at the end
of the tunnel can offer so much hope, and that is what my profession
is about.
Thanks for listening.
Renee Pavlus

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> Today's Topics:
>
>    1. Re: A little concerned about this new drug aimed	at	totally
>       blind population (Mike Freeman)
>    2. Re: A little concerned about this new drug aimed	at	totally
>       blind population (Mike Freeman)
>    3. Re: A little concerned about this new drug aimed at	totally
>       blind population (Karen Rose)
>    4. Re: A little concerned about this new drug aimed at	totally
>       blind population (Mike Freeman)
>    5. Re: A little concerned about this	newdrug	aimedat	totally
>       blind population (Larry D. Keeler)
>
>
> ----------------------------------------------------------------------
>
> Message: 1
> Date: Sat, 1 Feb 2014 16:11:02 -0800
> From: "Mike Freeman" <k7uij at panix.com>
> To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed
> 	at	totally blind population
> Message-ID: <05db01cf1fab$42f00a90$c8d01fb0$@panix.com>
> Content-Type: text/plain;	charset="us-ascii"
>
> Lauren:
>
> None of these pronouncements are official NFB policy; they are merely some
> NFB members expressing their skepticism and/or expressing unease at the
> tenor of some of Vanda Pharmaceutical's ads or (in my case) wondering why
> some test participants haven't been paid yet.
>
> Rest easy.
>
> Mike
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Loren
> Wakefield
> Sent: Saturday, February 01, 2014 3:24 PM
> To: 'NFB Talk Mailing List'
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
>
> I am going to go against the flow here.  To say this is not a problem is
> for
> lack of a nicer word, stupid .  If you have it, you just cannot function
> when you are in the worst of it.  If the NFB is against this known fact, it
> should give back the funds it got for the research from it.  My wife and I
> both took the survey; so,I know they received at least $50.00 from it.  If
> it does not affect you, count your blessings.  It's more than not being
> able
> to stay on a regular sleeping schedule.  I'm sorry if this sounds wrong.
> But this is sounding like because we are members of NFB, we are super
> humans
> and can't be bothered by anything.  I know way to many in the NFB to think
> that we do not care about our fellow human beings.  If you are not
> currently
> bothered by it, be glad and pray you never are.
>
> Loren
>
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of David
> Andrews
> Sent: Saturday, February 01, 2014 5:05 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
>
> hMike:
>
> I won't say you don't know what you are talking about -- but most of your,
> and other people's info is anecdotal.  I have a 5 day a week job, and make
> it in most days (smile,) but have sleep problems.  So, I am sure you are
> right in some cases, but not all.
>
> Dave
>
> At 03:48 PM 2/1/2014, you 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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>
> ------------------------------
>
> Message: 2
> Date: Sat, 1 Feb 2014 16:16:35 -0800
> From: "Mike Freeman" <k7uij at panix.com>
> To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed
> 	at	totally blind population
> Message-ID: <05dc01cf1fac$09ce6170$1d6b2450$@panix.com>
> Content-Type: text/plain;	charset="us-ascii"
>
> Pete:
>
> In fairness to Vanda, we do not know that they did *not* do base-line sleep
> studies to determine that other factors weren't involved. So while I am
> uneasy about the big splash Vanda is trying to make and also think the
> whole
> field of sleep disorders and the blind is more complex than most are
> willing
> to admit, I don't think we should tar an feather Vanda by accusing it of
> doing something it might very well have done and is continuing to do.
>
> Mike
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Peter
> Donahue
> Sent: Saturday, February 01, 2014 3:14 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
>
> Hello Beth and everyone,
>
>     And to the best of my knowledge they're not first putting their test
> subjects through baseline sleep studies to rule out legitimate sleep
> disorders before determining that the issue is connected with the
> sleep-wake
> cycle. What I fear is happening is that these folks are convinced that
> one's
> blindness affects our ability to sleep normally ignoring the possibility
> that these blind individuals may have bonafied  sleep disorders having
> nothing to do with their blindness. As long as blind individuals and the
> NFB
> continue to be suckers for this kind of research they'll keep on doing it.
>
>     I know first hand what can happen when a sleep disorder goes
> undiagnosed
> for years. When I was growing up folks thought that my blindness was
> affecting my sleeping. It took an unfortunate incident I was involved in
> during our 2001 National Convention that eventually lead to my being
> diagnosed with the worst case of Obstructive Sleep Apnea (OSA)
> imaginable!It's very possible that had the Sleep Apnea been diagnosed
> sooner
> the incident I referred to above and other difficulties I had through the
> years due to lack of sleep could have been prevented. I fear that other
> blind individuals are being sent down that same road.
>
>     The NFB has had a long history of scrutinizing so-called research of
> this kind. I fear we fell down on the job with this one. If these people
> were conducting this research responsively they would require their
> subjects
> to undergo sleep studies before investigating sleep-wake issues that may or
> may not be directly connected to blindness. These people have been
> frighteningly silent on this point. Having experienced what can happen when
> a sleep disorder goes undiagnosed neither of us want any part of such
> pseudo
> research and hate the thought of drug companies getting rich at our
> expense.
>
> We will be glad when the NFB disassociates from what these people are doing
> and turns its attention to more important matters concerning our ability to
> live independent and productive lives.
>
> Peter Donahue
>
>
>
>
>  ----- Original Message -----
> From: <beth.wright at mindspring.com>
> To: <nfb-talk at nfbnet.org>
> Sent: Saturday, February 01, 2014 3:33 PM
> 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 so-called disorder.
>>
>> _______________________________________________
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>
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>
> ------------------------------
>
> Message: 3
> Date: Sat, 1 Feb 2014 16:21:59 -0800
> From: Karen Rose <rosekm at earthlink.net>
> To: NFB Talk Mailing List <nfb-talk at nfbnet.org>
> Cc: NFB Talk Mailing List <nfb-talk at nfbnet.org>
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed
> 	at	totally blind population
> Message-ID: <9AAB4025-D777-41D5-BAC8-36B60C0CCFEA at earthlink.net>
> Content-Type: text/plain;	charset=us-ascii
>
> Have you seen any studies that attempt to understand why some totally blind
> people have this condition and others do not. I have been totally blind
> since birth and have never had any problem whatsoever sleeping. Smile.
> However I have eight fully cited client who seems to exhibit all of the sock
> of this condition. Karen
>
> Sent from my iPhone
>
>> On Feb 1, 2014, at 4:01 PM, Michael Bullis <bullis.michael at gmail.com>
>> wrote:
>>
>> I have been following the studies on this subject for almost 40 years
>> now. It is a real and valid problem for some people who have little or
>> no light perception. There have been many studies and much validation.
>> Although I think the advertisements are a bit stupid, the problem they
>> are trying to solve, and it would appear, that the drug they're trying
>> to use, does work.
>>
>> Sent from my iPhone
>>
>>> On Feb 1, 2014, at 6:39 PM, Mike Freeman <k7uij at panix.com> 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
>
>
>
> ------------------------------
>
> Message: 4
> Date: Sat, 1 Feb 2014 16:22:33 -0800
> From: "Mike Freeman" <k7uij at panix.com>
> To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed
> 	at	totally blind population
> Message-ID: <05dd01cf1fac$df713cd0$9e53b670$@panix.com>
> Content-Type: text/plain;	charset="us-ascii"
>
> Actually, there were some studies (using sighted people) during the 1970's
> that kept all in controlled environments for months at a time with no clue
> as to time of day and they seemed to show that, if left to itself, the
> free-running human biological clock ran at about 25 hours rather than the
> 24
> we would expect. However, the control conditions were much more severe than
> I suspect Vanda's studies are.
>
> Mike
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Michael
> Bullis
> Sent: Saturday, February 01, 2014 4:02 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
> totally blind population
>
>  I have been following the studies on this subject for almost 40 years
> now. It is a real and valid problem for some people who have little or
> no light perception. There have been many studies and much validation.
> Although I think the advertisements are a bit stupid, the problem they
> are trying to solve, and it would appear, that the drug they're trying
> to use, does work.
>
> Sent from my iPhone
>
>> On Feb 1, 2014, at 6:39 PM, Mike Freeman <k7uij at panix.com> 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.
>>
>>> _______________________________________________
>>> nfb-talk mailing list
>>> nfb-talk at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-talk_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>>> nfb-talk:
>>> http://nfbnet.org/mailman/options/nfb-talk_nfbnet.org/k7uij%40panix.com
>>
>>
>>> _______________________________________________
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>>> nfb-talk at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nfb-talk_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>> nfb-talk:
>>>
> http://nfbnet.org/mailman/options/nfb-talk_nfbnet.org/steve.jacobson%40visi
>> .com
>>
>>
>>
>>
>>
>> _______________________________________________
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>>
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> nfb-talk:
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> .com
>
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>
>
> ------------------------------
>
> Message: 5
> Date: Sat, 1 Feb 2014 19:25:49 -0500
> From: "Larry D. Keeler" <lkeeler at comcast.net>
> To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
> Subject: Re: [nfb-talk] A little concerned about this	newdrug	aimedat
> 	totally blind population
> Message-ID: <1E29528E33D3443C9173D2CBC3417A36 at yourec0540d030>
> Content-Type: text/plain; format=flowed; charset="iso-8859-1";
> 	reply-type=original
>
> The other issue I have with this is that folks still don't exactly what the
>
> pineal gland does or why it stops doing it. It is proven that it has
> something to do with circadian thythm and is influenced by light but what
> that is is still sort of unclear. Melatonin is a hormone and I'm always
> worried about hormones and the effects of long term use. I wouldn't want to
>
> treat sleep disorders for example and find out that melatonin shuts off
> something vital after many years of exposure.
> ----- Original Message -----
> From: "Mike Freeman" <k7uij at panix.com>
> To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
> Sent: Saturday, February 01, 2014 7:04 PM
> Subject: Re: [nfb-talk] A little concerned about this newdrug aimedat
> totally blind population
>
>
>> That'll do it for a lot of people. (grin)
>>
>> I, on the other hand, can schlep down several cups of coffee and go right
>>
>> to
>> sleep.
>>
>> Weird, eh?
>>
>> Mike
>>
>>
>> -----Original Message-----
>> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Larry D.
>> Keeler
>> Sent: Saturday, February 01, 2014 3:29 PM
>> To: NFB Talk Mailing List
>> Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
>> totally blind population
>>
>> My sleeping issue is that I love caffine! Coffee, pop and chocolate!
>> Yummm!!!
>> ----- Original Message -----
>> From: "Steve Jacobson" <steve.jacobson at visi.com>
>> To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
>> Sent: Saturday, February 01, 2014 5:23 PM
>> Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
>> 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.
>>>
>>>>_______________________________________________
>>>>nfb-talk mailing list
>>>>nfb-talk at nfbnet.org
>>>>http://nfbnet.org/mailman/listinfo/nfb-talk_nfbnet.org
>>>>To unsubscribe, change your list options or get your account info for
>>>>nfb-talk:
>>>>http://nfbnet.org/mailman/options/nfb-talk_nfbnet.org/k7uij%40panix.co
>>>>m
>>>
>>>
>>>>_______________________________________________
>>>>nfb-talk mailing list
>>>>nfb-talk at nfbnet.org
>>>>http://nfbnet.org/mailman/listinfo/nfb-talk_nfbnet.org
>>>>To unsubscribe, change your list options or get your account info for
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>>>>http://nfbnet.org/mailman/options/nfb-talk_nfbnet.org/steve.jacobson%4
>>>>0visi.com
>>>
>>>
>>>
>>>
>>>
>>> _______________________________________________
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>>
>>
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> End of nfb-talk Digest, Vol 69, Issue 6
> ***************************************
>