[p2p-research] open source communications tool for disabled being developed by artists

Paul D. Fernhout pdfernhout at kurtz-fernhout.com
Fri Nov 13 03:15:56 CET 2009

Kevin Flanagan wrote:
> This might make an interesting blog post?
> Watch the video at -
> http://www.woostercollective.com/2009/11/eyewriter_source_code_released_to_the_pu.html
> EyeWriter Source Code Released To The Public
> "Members of Free Art and Technology (FAT), OpenFrameworks, the
> Graffiti Research Lab, and The Ebeling Group communities have
> teamed-up with a legendary LA graffiti writer, publisher and activist,
> named Tony Quan, aka TEMPTONE. Tony was diagnosed with ALS in 2003, a
> disease which has left him almost completely physically paralyzed…
> except for his eyes. This international team is working together to
> create a low-cost, open source eye-tracking system that will allow ALS
> patients to draw using just their eyes. The long-term goal is to
> create a professional/social network of software developers, hardware
> hackers, urban projection artists and ALS patients from around the
> world who are using local materials and open source research to
> creatively connect and make eye art.
> This week the team behind the EyeWriter project released all the
> Source code, free software, DIY instructions, and eye tags by Tempt1
> to the public at eyewriter.org"

See also, for a possible treatment idea for ALS involving vitamin D:


On the other hand, these people are concerned about it:

But perhaps mistakenly:

"The urgent need to recommend an intake of vitamin D that is
effective1 (Am J Clin Nutr Vieth et al. 85 (3): 649.)" from 2007:
Evaluation of most relations of health and disease that involve vitamin D 
leads to the conclusion that a desirable 25(OH)D concentration is ≥75 nmol/L 
(30 ng/mL) (3-5). If a concentration of 75 nmol/L is the goal to be achieved 
by consumption of vitamin D, then why is it so rare for members of the 
population to accomplish this? One reason is that almost every time the 
public media report that vitamin D nutrition status is too low, or that 
higher vitamin D intakes may improve measures of health, the advice that 
accompanies the report is outdated and thus misleading. Media reports to the 
public are typically accompanied by a paragraph that approximates the 
following: "Current recommendations from the Institute of Medicine call for 
200 IU/d from birth through age 50 y, 400 IU for those aged 51–70 y, and 600 
IU for those aged >70 y. Some experts say that optimal amounts are closer to 
1000 IU daily. Until more is known, it is wise not to overdo it." The only 
conclusion that the public can draw from this is to do nothing different 
from what they have done in the past.
   Supplemental intake of 400 IU vitamin D/d has only a modest effect on 
blood concentrations of 25(OH)D, raising them by 7–12 nmol/L, depending on 
the starting point. To raise 25(OH)D from 50 to 80 nmol/L requires an 
additional intake of {approx}1700 IU vitamin D/d (11). Safety is the first 
priority when giving advice to increase supplementation or fortification 
with any nutrient. A recent review in this Journal applied the risk 
assessment method used by the Food and Nutrition Board to update the safe 
tolerable upper intake level (UL) for vitamin D (12). The method focuses on 
the risk of hypercalcemia. The conclusion was that the UL for vitamin D 
consumption by adults should be 10 000 IU/d (12). This indicates that the 
margin of safety for vitamin D consumption for adults is >10 times any 
current recommended intakes.
   The balance of the evidence leads to the conclusion that the public 
health is best served by a recommendation of higher daily intakes of vitamin 
D (3). Relatively simple and low-cost changes, such as increased food 
fortification or increasing the amount of vitamin D in vitamin supplement 
products, may very well bring about rapid and important reductions in the 
morbidity associated with low vitamin D status. The current UL is but one 
impediment to this action; another is the perpetuation of outdated intake 
   It is important for major journals such as the AJCN to publish evidence 
of a widespread nutrient deficiency. Regrettably, we are now stuck in a 
revolving cycle of publications that are documenting the same vitamin D 
inadequacy (1-3, 5, 7-9, 13-17). This phenomenon has been referred to as 
"circular epidemiology" (18), and, for vitamin D, the phenomenon will 
continue for as long as the levels of vitamin D fortification and 
supplementation and the practical advice offered to the public remain 
essentially the same as they were in the era before we knew that 25(OH)D 
even existed. As scientists, the purpose of our work is to improve the 
health of the public. We know the realities of serum 25(OH)D concentrations 
in populations around the world, and we have come to the conclusion that 
public health will benefit from improved vitamin D nutritional status. We 
know the intakes of vitamin D needed to bring about desirable 25(OH)D 
concentrations, so why is the science not making a difference to public 
health? A major reason is that there is little public pressure on policy 
makers to support efforts to update recommendations about nutrition. Public 
pressure is generally rooted in the media, but we do not think that the 
public media present the vitamin D story in a complete and accurate manner. 
Reports about vitamin D inadequacies are presented straightforwardly, but, 
when it comes to discussing the intake of vitamin D needed to correct the 
situation, outdated official recommendations for vitamin D are propagated by 
the public media. This probably occurs because of restrictive editorial 
policies driven by concern about possible litigation if media were to advise 
a "toxic" intake greater than the UL. The unfortunate result is that there 
is minimal motivation for policy makers to implement the relatively simple 
steps that could correct this nutrient deficiency.
   Because of the convincing evidence for benefit and the strong evidence of 
safety, we urge those who have the ability to support public health—the 
media, vitamin manufacturers, and policy makers—to undertake new initiatives 
that will have a realistic chance of making a difference in terms of vitamin 
D nutrition. We call for international agencies such as the Food and 
Nutrition Board and the European Commission's Health and Consumer Protection 
Directorate-General to reassess as a matter of high priority their dietary 
recommendations for vitamin D, because the formal nationwide advice from 
health agencies needs to be changed.

--Paul Fernhout

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