One of the most important documents ever published by New York Native

From a May 8, 1989 report by Neenyah Ostrom in the New York Native

The following letter is one of numerous documents obtained from the Centers for Disease Control (CDC) under a Freedom of Information Act request. It was written to Surgeon General C. Everett Koop in spring 1987 by a physician diagnosed as having Chronic Epstein-Barr Virus Syndrome (CEBV), the name by which [chronic fatigue syndrome] was described at the time. This is an edited version of the lengthy letter; emphasis was supplied by the letter's author. The writer's name and all identifying characteristics have been deleted to protect the privacy of the individual. The information contained in this letter, however anecdotal, is too important not to divulge.

Surgeon General Dr. C.Everett Koop
200 Independent Ave., SW
Washington, DC 20201

Dear Sir:

     This letter concerns chronic mononucleosis and the possibility that the contagious but unidentified-as-yet virus causing it is also the trigger for full-blown AIDS. I personally know many (about 40) health care workers who have contracted CEBV since 1981, all of whom were previously healthy, and all of whom worked with AIDS or lymphoma patients, usually through working in intensive care unit direct patient care, or as oncology nurses, or as ear-nose-throat doctors at the time they became ill.
     I am writing about a highly contagious, rapidly spreading, viral epidemic in America now occurring that is a more serious threat to our society than AIDS.
     I am a middle-aged board-certified physician and have had the misfortune of contracting "chronic Epstein-Barr virus reactivation syndrome" ("chronic mononucleosis" or "CEBV") four years ago. I had had a productive, satisfying, medical practice prior to that time and had been in excellent health, but awoke with a severe throat and flu-like illness one day and have been totally disabled since, solely due to "CEBV." There are many thousands of other patients totally disabled by this disease, almost all of whom have caught it since 1980. Like AIDS, the rate of new cases seem to be accelerating. I have followed closely the research efforts and several things are clear:
     1. The cause is a very contagious virus spread like the common cold.
     2. Epstein-Barr virus is not the cause, but is reactivated due to the immune system suppression caused by other as-yet-unidentified virus.
     3. The immune system damage and other abnormalities produced by this virus resemble in some ways those found in AIDS patients.The reason that this is a more serious threat to our society than AIDS is that it is spread by much more casual contact, is much more highly contagious, and rapidly spreading. Rather than killing the victims, it renders them permanently disabled. Many are on Social Security Disability. Recovery usually does not occur to any degree. The dollar cost to our socity of CEBV is already comparable to that for AIDS and may soon exceed it.
     4. Very young and old people are much less likely to develop CEBV. The frequent disability of persons of ages serving in the armed services is of great concern. I have already been told of the occurrence of total disability due to CEBV recently requiring some soldiers to leave the service. The CEBV epidemic could have a disastrous effect on our armed services, much more dangerous than AIDS, due to its ability to rapidly spread like the common cold. Since it can spread as quickly as it recently did in Lake Tahoe, where over 500 people contracted it within several months, it can quickly disable entire bases, as well as leave a large number of personnel permanently disabled at great expense.
     The CDC has made some commendable efforts on CEBV, but their effort has been greatly limited by insufficient manpower and commitment to CEBV. The CDC quickly needs to greatly increase the resources devoted to it:
     1. The CDC should promptly develop a bank of stored serum and blood specimens from CEBV patients to be available to researchers. This is presently not accomplished.
     2. The CDC should perform epidemiological and virological studies of this disease in various communities in the U.S. where outbreaks of CEBV have occurred and are occurring. The CDC so far has not utilized available tests of immune function that are abnormal in CEBV patients. Diagnosis should be based on a developing set of criteria resulting from a study by the CDC and NIH including:
     * Decreased natural killer cell activity as found by Drs. Strauss and Komaroff in their studies;
     * Decreased interleukin-2 activity as found by Drs. Straus and Komarofdf in their studies;
     *Abnormalities of immunoglobulin levels, including subclasses;
     * Monoclonal B cell proliferation by flow cytometry;
     * Other immunologic abnormalities;
     * Correlation with titers to other candidate viruses such as: HBLV [later known as HHV-6] through cooperation with Dr. Gallo's lab; unique strain of adenovirus type II through cooperation with Dr. Purtillo's lab; defective parvovirus (Adeno-Associated Virus) through cooperation with Dr. Jim Rose's NIH lab; the four known types of human parvovirus through cooperation with Dr. Hilliard's lab in San Antonio; novel strains of EBV through cooperation with Dr. Niederman's group; other unidentified viruses, e.g. African Swine Fever-related Virus, through cooperation with Dr. Gallo's lab; virulent genome passed between various viruses through cooperation with Dr. Gallo's lab.
     Only through this sort of effort is the answer to this epidemic threatening our country and our armed services likely to be found soon. Likely candidates include an immunosuppressive lymphotrophic virus that can establish a persistent infection and immunosuppression such as those mentioned above.
     Funding for rapid evaluation of leads as to the cause of CEBV should be set up by the CDC and NIH. The present grant system requires years of grant writing and review and moves much too slowly to be useful in this situation. The congress should specifically require the CDC and NIH to set up quickly available funds for rapid evaluation of leads that emerge as to the cause of CEBV, as well as greatly increasing long-term funding of CEBV research. There is reason to believe that the same virus that causes CEBV causes many lymphomas, and that this virus is not EB virus. Thus specific funding to find the other viruses likely causing CEBV should be required of CDC and NIH by congress, as the present commitment of funds to EB virus research is not going to solve this problem.
     There should be the appointment of an an accomplished senior investigator, who has a track record of success in identifying new pathogens, to spend full time heading the NIH's CEBV program. Another accomplished senior investigator should be appointed to head the CDC's CEBV program.
     Power similar to that of a General in war time should be given to these senior officials. This would help ensure full and rapid cooperation between competing labs and scientists working on these problems.
     The cause of the epidemic of CEBV syndrome is unknown. More research is urgently needed. The researcher listed below are actively working on CEBV and would be willing to give further information to you if you contacted them about this very serious and spreading public health problem. The information they have will substantiate what I have presented to you in this letter.
     Thank you for your interest in this very serious epidemic. I would appreciate anything you can do to help.

The New York Native 1980-1997

A 20th Century Newspaper of Firsts

1. First newspaper to break the story of AIDS.

2. First newspaper to make AIDS its signature story.

3. First newspaper the Centers for Disease Control leaked news of the discovery of what the institution thought was the "cause of AIDS.

4. First newspaper to do an in-depth interview with Robert Gallo.

5. The first newspaper to raise questions on a regular basis about Robert Gallo's so-called  "discovery," and to provide thorough coverage of the Gallo scandal.

6. The first newspaper to cover the scientists who found holes in the HIV theory of AIDS and who dared to criticize the powerful AIDS establishment.

7. The first newspaper to publish investigative reporting on AZT. 

8. The first newspaper to provide regular coverage of HHV-6, the "other AIDS virus."

9. The first newspaper to have a full time reporter covering the chronic fatigue syndrome epidemic.

10. The first newspaper to do investigative reporting on the intertwined nature of AIDS and chronic fatigue syndrome.