OUR REPLY TO THE NEI

Paul:
Your letter arrived today. It would certainly be nice if we could have a professional discussion about what to do about the myopia prevention tragedy, but sending me a one-paragraph, brush-off, form letter is not the way to initiate it. While I am willing to watch my tongue when writing to you, that is not true of my Web site. There, I need to get the public's attention, so I tell it like it is. And it isn't pretty. You have your head in a cloud if you think that "research as usual" is going to solve this problem. You need to come down to earth and see that all this is not about objective research or science. It is about money. It is about doctors benefiting doctors and screwing the public.

Here is the situation:
1. I know of no researcher or doctor in the country who has any genuine interest in myopia prevention. Many eye doctors would be glad to see the Myopter disappear. So where can I find an unbiased researcher?

2. Even if I had such a researcher, I would not waste his time and mine preparing a grant application. I know it would be rejected, just as Kupfer rejected our previous application.

3. Even if we did apply for a grant, got the grant money, and conducted a test that showed myopia could be reversed, it would only be ignored by the eye doctors. Who speaks of Frank Young's research any more? I doubt that it is even mentioned in the optometric schools. Are YOU even familiar with it?

4. The kind of myopia research you sponsor that I have seen over many years is laughable. Here's an example:

Further refinement of the MYP2 locus for autosomal dominant high myopia by linkage disequilibrium analysis.

Young TL, Atwood LD, Ronan SM, Dewan AT, Alvear AB, Peterson J, Holleschau A, King RA.

Department of Ophthalmology, University of Minnesota Medical Center, Minneapolis, Minnesota, USA. youngt@email.chop.edu

INTRODUCTION: High myopia (>-6.00 diopters) is a complex common disorder that predisposes individuals to retinal detachment, glaucoma, macular degeneration, and premature cataracts. A recent linkage analysis of seven families with autosomal dominant high myopia has identified one locus (MYP2) for high myopia on chromosome 18p11.31 (Young et al.: Am J Hum Genet 1998;63:109-119). Haplotype analysis revealed an initial interval of 7.6 centimorgans (cM). METHODS: Transmission disequilibrium tests (TDT) with both the Statistical Analysis for Genetic Epidemiology (SAGE) 3.1 TDTEX and GENEHUNTER 2 (GH2) programs were performed using chromosome 18p marker alleles for this interval. RESULTS: Using SAGE analysis, the following p values were obtained for markers in marker order in this region: D18S1146 (p = 0.227), D18S481 (p = 0.001), D18S63 (p = 0.062), D18S1138 (p = 0.0004), D18S52 (p = 1.79 x 10(-6)), and D18S62 (p = 0.141). GH2 TDT analysis revealed the following p values for the best allele for the markers: D18S1146 (p = 0.083), D18S481 (p = 0.108), D18S63 (p = 0.034), D18S1138 (p = 0.011), D18S52 (p = 0.007), and D18S62 (p = 0.479). CONCLUSION: These data suggest that the gene for 18p11.31-linked high myopia is most proximal to marker D18S52, with a likely interval of 0.8 cM between markers D18S63 and D18S52. Due to the contraction of the interval size by TDT, these results provide a basis for focused positional cloning and candidate gene analysis at the MYP2 locus.

I don't know if NEI funded this or not, but what a bunch of CRAP and what a waste of money! Do you really think this kind of research is going to solve the myopia problem? This is just another attempted justification for the hereditary theory they all love. Myopia is caused by excessive close work. The solution is to remove the cause. It's that simple.

Your suggestion to apply for a peer-reviewed grant is quite amusing. The so-called peers would be eye doctors and others who are violently opposed to really ending the myopia mess. My true peers are other consumer advocates and the public. Would you be willing to let THEM decide on the merits of a Myopter test?

I can't help thinking what you would do if you came upon a capsized boat with people struggling in the water. Would you throw them a piece of lumber lying at your feet, or would you call for a year-long study to determine if the lumber is the proper method to deal with the situation? Every day of inaction that passes means more visual cripples in the world.

Here is what needs to be done:

1. The first thing you must do is read the entire www.myopia.org site. I am sure you don't even know what a Myopter is at this point. Have you read my published paper on the subject? Only then will you know what I am all about. And you will learn some things you were not taught in school. Just get down off your high horse and act like a normal person. I speak not just for myself but for millions of people who don't even know they are being exploited. If they knew the facts, heads would roll.

2. From that site you can link to my www.pinholeglasses.org site and learn how the FDA, under pressure from eye doctors and optical companies, once destroyed the businesses of several vendors of harmless pinhole glasses. They did this to protect optical interests.

3. You can also link to my www.cholesterolcheck.org site and learn how the FDA has gone to court and tried to eliminate Red Yeast Rice from the market so as to protect pharmaceutical and doctor interests. This product does what the statin drugs do, but without the toxic effects. Since many people don't have the money for statins or cannot tolerate them, the FDA is killing people.

4. Then you can consider that the NEI is acting in the same manner, thumbing its nose at myopia prevention to protect the financial interests of optical companies and doctors.

5. The NEI itself must test the Myopter. You must personally take it under your wing. I will assist in writing the protocol, monitoring the test, and making sure the test is not sabotaged.

6. All you will need is a dozen young kids with low myopia. Each will get a Myopter and be instructed in its use. At the end of a month, most, if not all, will show a reduction in their minus refraction. I will donate the Myopters and this will be the shortest, cheapest, and most useful test ever done by the NEI.

7. You and I will then announce the results to the world at a press conference. We will call for a total reversal in the way myopia is treated. Minus lenses will be named as the vision destroyers they are. The destruction of the vision of hundreds of millions of people that has been going on for over a century will finally come to an end. And the president will give you a medal.

Not expecting to hear from you, a few days ago I put your name at the top of the myopia.org home page. By clicking on it, visitors will come to a page devoted to what is wrong with the NEI.

I bear you no personal animosity. I see you as just another bureaucrat looking out for himself. But I cannot attack the NEI without mentioning you. You are directly in the line of fire. I recently decided that the NEI is a better target than the nebulous mass of doctors in the country. And people can more easily focus on a person than a faceless bureaucracy. My attack on the NEI will certainly expand, just as the myopia site has greatly expanded from its original four short pages a few years ago. Unless you and I can reach an agreement, that's how it has to be.

Kupfer came across as a shallow idiot, totally absorbed with his ego and his career. Judging by your picture, I don't put you in the same category. I suspect that you are basically an intelligent, well-meaning person stuck in a rut that is not of your own making. But you can't stay in a rut and be a revolutionary. And revolutionaries are needed at this point.

Finally, I will share with you an email I received just this morning. Put yourself in this person's position and then tell me what you are doing to prevent this kind of doctor-caused tragedy, using the minus lens as their weapon:

From: Judith Burford
To: IMPA
Sent: Sunday, October 06, 2002 5:33 AM
Subject: Retinal degeneration

Dear Sir: Your website made very interesting reading and it is particularly disturbing for people like myself. I am 47 years of age and have worn glasses since the age of 11 years, then Toric contact lenses since the age of 20 years. My vision has grown steadily worse and is now -14 in the right eye and -12 in the left. They found retinal degeneration and I was sent by my optician to an ophthalmologist recently. I was informed that there was nothing they could do. I am a teacher and have many years ahead before I can afford to retire. I need to drive to work. I am seeking information from all sources to see if there is anything I can do to improve my vision and ease the strain on my eyes. I do not wish to suffer further deterioration nor the threat of retinal detachment. Are there any answers? Yours Sincerely, Mrs. Judith Burford.

Donald Rehm

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