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

Peter Donahue pdonahue2 at satx.rr.com
Sun Feb 2 11:56:26 UTC 2014


Hello Heather and others,

The same claims were reached by researchers with regard to our sex drives in 
the 1970s and were mentioned in Dr. Jernigan's Banquet Speech Blindness: Is 
the Public Against Us.

Peter Donahue


----- Original Message ----- 
From: "Heather Field" <missheather at comcast.net>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 9:38 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimed 
attotally blind population


> Hello all,
> I am not asserting that there are not blind people who have sleep 
> disorders. Nor am I
> denying that some may find this drug helpful. However, there are some very 
> real problems
> with what this drug company is claiming. Perhaps the most worrying of all 
> is their claim that,
> because totally blind people cannot see light, their physical functioning 
> is not influenced by
> that light. This claim is completely false. I know of numerous totally 
> blind children and adults
> who have experienced trouble sleeping, or who have suffered from Seasonal 
> Affective
> disorder, and have responded dramatically to light therapy. They simply 
> spend a specified
> amount of time each day, sitting in the light from the special, extremely 
> bright lamps, just as
> sighted people with these problems also do, and symptoms are gone. Even 
> though the blind
> people cannot take in the light through their eyes, they experience 
> complete relief from the
> symptoms. This fact, that blind people respond to bright light therapy, 
> challenges the validity
> of the premise on which this whole study and the subsequent need for the 
> drug they've
> developed, is based.
>
> Furthermore, in the entire time this research has been going on, I have 
> never read any
> reports regarding the prevalence of sleep disorders among totally blind 
> people who live in
> countries that do not have the dark and cloudy, cold winters experienced 
> in the United
> States. Are there lots of totally blind people with sleep disorders in 
> Australia, Indonesia,
> Africa and South America, and all the various countries on or near the 
> equator, where winter
> is a season of long, sunny days, or where there is no winter at all?  Or 
> are sleep disorders among
> the blind in these areas no more common among the sighted? Doctors know 
> that Exposure
> to sunlight results in the body producing vitamin D. Has anybody studied 
> whether sighted
> people wearing sleep shades still produce the same amounts of vitamin D as 
> those who
> also see the sunlight? Do the eyes need to see the sunlight for the body 
> to create the
> vitamin d? There are a lot of unanswered questions and, importantly, a lot 
> of money to be
> made by not questioning certain assumptions about totally blind people and 
> whether bodies
> are affected by light that is not visually perceived.
>
> Claims about the inability of the blind to stay awake or be alert on the 
> job without this drug
> have the potential to be extremely damaging, despite the apparent problems 
> with the
> research study itself. Do you think the average employer will consider the 
> below problems
> with this study?
>
> main problems.
> 1. Sample size.
> The sample size must be large enough to allow for generalisable 
> conclusions to be drawn.
> According to their press release, This drug has only been trialed on one 
> hundred and four
> people with the disorder. Surely they can find more people to trial the 
> drug on if there are at
> least one hundred thousand people with the problem, as they claim. How can 
> they
> generalise from the experiences of only 104 people?
>
> 2. A control group.
> For the research findings to be truly reliable, a control group of totally 
> blind subjects,
> matched in at least age and gender, and who also have the non-24 hour 
> sleep disorder,
> would need to have been organised. Whether they were given nothing, or a 
> placebo is a
> variable that would need to be decided. However, all participants would 
> need to have been
> tested for baseline sleep and awake times, variations etc. Then, the 
> intervention would
> need to have been given and, finally,  the sleep and awake behaviours of 
> the two groups
> would need to have been compared. They would need to report the variables 
> they were
> studying, such as amount of time spent in restful sleep, the amount of 
> alert wakeful hours,
> the amount of focused attention span etc., and then prove that the drug 
> taking subjects
> improved on these variables by a statistically significant amount, whereas 
> those in the control
>
> group did not. The lack of a control group makes the research much less 
> reliable. Of course,
> this is always the problem when researchers try to study issues in the 
> blind population.
> They always have trouble finding a large enough sample, let alone enough 
> blind people to
> make an equally large control group. So, they go ahead and generalise 
> anyway.
>
> 3. Controlling for variables.
> The study needs to control for variables that may interfere with the 
> results. As has already
> been discussed on this list, there are a large number of variables that 
> can cause sleep
> disorders among blind people. This is the weakest area in this study. 
> There are so many
> things that can be causing the blind participants to have sleep problems. 
> Lack of exercise,
> stress and other, undiagnosed sleep disorders are the obvious ones. 
> However, there are
> many others. Age of participants, overall physical health, gender, 
> medications, diet, level of
> physical or mental activity, even the season, to name just a few. For 
> anyone to take the
> research seriously, these variables would need to have been taken into 
> account. Variables
> which are easily manipulated, such as amount of physical and mental 
> activity, dietary
> intake, stress level etc. needed to have been altered and further study of 
> the drugs
> effectiveness under these differing circumstances needs to have been done, 
> before the
> results could be considered reliable.
>
> Until we see the whole report we can only speculate but, it looks like the 
> research study is
> not reliable, and that FDA has been mislead about the prevalence of this 
> very specific sleep
> disorder, as well as this drug being the urgently needed, only available 
> cure for the problem.
> It will be interesting to see what eventuates. Will the medical profession 
> apply the normal
> rigorous standards of investigation and replication when assessing the 
> reliability the claims
> of this initial study? Or will these results be accepted without question 
> and generalised to
> paint all blind people with the same sleep disorder brush? I'm afraid I'm 
> not confident the
> outcome will be good for blind people.
> Regards,
> Heather
>
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