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

Sun Feb 2 23:11:00 UTC 2014

Larry, 

I have some questions about this that I just don't know the answers to.  Per
instance, is it more likely to be a blind person that has the natural eyes
removed ande have artifial eyes.  Or is it a problem that gets worse as one
gets older?  I don't know if these studies have addressed these issues.  But
a purely uneducated guess is that the answers to both question is yes>  I
say that only because of what I have observed.  And since my opinion is
free, it could be worth just as much.  

Loren 

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Larry D.
Keeler
Sent: Saturday, February 01, 2014 10:06 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed
attotally blind population

Heather, I wholeheartedly aggree with you! As a boy, I had some sight. When
I was ten, my eye was removed. I am now quite a bit older. I have no issues
with disorientation beyond the normal. I don't have any sleep issues not
attributed to anything I don't already know about. I do suppose that some
blind people do have sleep disorders. I further believe that many may have
circadian issues as well. But, we may suffer many other disorders besides
sleeping ones as well. Because blindness need not be a symptom of something
else but may stand alone as its own condition. My only worry is that
otherwise rational folks will think that these drugs are a cure all for any
blind person who happens to have poor sleep. They may or may not help
provided whether the person has the probblem they address. Some folks may
benefit from them. The conditions they address do exist. But, not everyone,
including me has those contitions. I know a few folks who do have them and
you can tell who they are if you know them and talk with them. I am thinking
about this from a sscientific point of veiw not from a blindness or lack
there of point of veiw.
----- Original Message -----
From: "Heather Field" <missheather at comcast.net>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 10:38 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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