Posted by Librarian on 4/3/2002, 8:54 am

To: "Mike Crutcher" Sent: Wednesday, April 03, 2002 12:39 AM Subject: Oklahoma Project Results Dear Dr. Crutcher, It is now almost two years since "The Project" and more and more people have become ill from this undiagnosed disease. While the NPA continues with efforts to get the paper published, people continue to suffer in so many ways. Additionally, participants in the Oklahoma Project are entitled to know what was found in their skin scrapings. Physicians who have seen the images are clueless regarding identifications and apparently not curious enough to seek assistance from scientists who could provide that information. There has been a lot of correspondence between individual sufferers and people at the NIH and CDC. The position that the NIH takes is that nothing can be done until a paper is published. At that time, proposals for research grants will be entertained. The CDC's position is that there are not enough reports from state epidemiologists and there is uncertainty about the contagious nature of the illness. At this point, it is imperative that you contact the CDC and let them know of your involvement in the project, let them know that people are suffering and let them know that there in fact may be an issue of contagion. The question of contagion is important and seems to be "yes" since many in the same household suffer. Certainly the disease is communicable, otherwise there would not be so many new reports. Those who suffer need someone to champion this cause for them. Medical doctors disbelieve, the illness is undiagnosed, and subsequently lives become ruined financially and emotionally. Since medical doctors do not assist, there are no reports made to state epidemiologist from the medical profession and many of those suffering do not understand that they could make their own report to your colleagues representing their own home state. It is most definitely a catch-22 situation. So I appeal to you to take action today not months from now. Contact Mary Shepherd at the CDC or Henrietta Hyatt-Knorr at the NIH and determine what action can be taken immediately on behalf of those suffering this illness. Please write back to me and let me know what your discussions yield. Mary Shepherd Medical Information Specialist Division of Parasitic Diseases Centers for Disease Control and Prevention Tel: (770) 488-7775 email: mes1@cdc.gov Fax: (770) 488-7761 Hyatt-Knorr, Henrietta (OD) <KnorrH@od6100m1.od.nih.gov> (301) 435-6045