MYCOPLASMA REGISTRY REPORT

By Sean and Leslee Dudley

Report on NIH & CFSCC Meetings February 6-8, 2000

The Registry was chosen from a lottery to speak before the CFSCC. Rather than send our newsletter or videos, which we had done twice before, we appeared in person, because we felt it was a pivotal time in the history of CFS. That assessment was correct.

Congressman Filner’s Historic Attendance

Knowing that Congressman Bob Filner was already well aware of issues important to CFS/FM and Gulf War Illness patients as a ranking member of the Veterans' Affairs Committee, we alerted him to the opportunity to speak to the CDC panel. He has been a strong advocate for mycoplasmal infections being a major cause of both CFS and Gulf War Illness. Congressman Filner helped in motivating the Department of Veterans' Affairs (VA) to begin the Nicolson Mycoplasma Doxycycline Study for Persian Gulf War Illness. He had already submitted written testimony to the November 2, 1999 CFSCC meeting. His personal testimony on February 8, would be the first time a member of Congress had appeared before the CFSCC.

The National Institutes of Health Meetings

February 6, 2000......................page 1

February 7, 2000..................... page 3

The Chronic Fatigue Syndrome Coordinating Committee Meeting February 8, 2000......................page 7

Congressman Bob Filner’s Written Testimony...................page 9

Mycoplasma Registry Members

Among the other patient advocates chosen to speak was Paula Carnes of South Carolina, and Mary O'Neill Beaudoin of Santa Maria, California. Both Paula and Mary are long time members of the Mycoplasma Registry and group leaders in their own right. Mary also decided to attend the meetings in person. She brought her two daughters, Nicole age eight and Miranda age five, both of whom tested positive for mycoplasmal infections. Mary wanted them to speak so that the Committee would become more aware of children with this disease.

Sunday, February 6

Secret NIH State of the Science Meeting

Protest

When we first heard about the secret NIH meeting, we immediately began plans for a public protest. However, the consensus from the CFS/FM community coalesced into a plan to attend the meetings to gather information before condemning them. However, we and Tom Hennessy had both come prepared with protest signs. They allowed nobody in the audience to speak or ask questions. Everybody behaved or they would have been removed.

"I'M MYCOPLASMA POSITIVE"

Tags that stated, I'M MYCOPLASMA + POSITIVE + were worn openly by ourselves, Mary and her daughters, Paula Carnes and others.

Meeting Coordinators: Straus-Reeves-Morens

Dr. Stephen Straus, former head of CFS research at National Institute of Allergy and Infectious Diseases (NIAID), but now heading the National Center for Complimentary and Alternative Medicine (NCCAM) at the NIH, coordinated the meeting. Dr. David Morens, the NIH CFS Program Director in the Virology Branch of NIAID, which includes CFS research, was present to oversee the meeting. Also present was Dr. William Reeves, Chief of the Viral and Exanthems and Herpesvirus Branch of the CDC, and a long time lead CFS investigator. They never listed these NIH meetings on the NIH website, although many other meetings were listed as far ahead as August. Those that were listed consisted of one or two speakers on limited subjects. The "State of the Science" meeting was a major symposium with thirteen speakers. The CFSCC objected to the meeting's timing, but was overruled, despite their quasi-official standing with Congress. This meeting was secret and designed to prevent patient attendance or participation. They were illegal and should have been rescheduled. An inauspicious beginning.

Waltzing to Straus, To the Tune of "Thinking Outside the Box"

Dr. Stephen Straus's chairing of the first meeting can best be described as a filibuster. Judging by Dr. Straus's statements, the CDC and NIH were throwing up their hands in defeat in their fruitless search for "the cause" of CFS. Funding would now mainly be directed toward treating psychological and physical symptoms and alleviating pain through drugs and exercise. "THINKING OUTSIDE THE BOX" was the refrain of the day. Outside researchers from unrelated fields were being encouraged to break through the wall that prevented successful treatment of patients.

Dr. Straus did mention mycoplasmas, but only to state that "We should not put funding into mycoplasmas because it will not be found to be the cause. If we do a study, it should not be done by someone who is emotionally involved."

Dr. Straus specifically singled out mycoplasmas to dismiss their value as a causative agent. He stated no scientific reasons for his authoritative declaration. Dr. Straus's aside that someone who is not "emotionally involved" should conduct a mycoplasma study, could only have been referring to Dr. Garth Nicolson.

Dr. Straus Officially Ends Search for the Cause of CFS/FM

These meetings marked an important event, the official defeat of the efforts by the CDC and the NIH to find the causative agent of CFS/FM. Apparently this is why patient advocates were not welcome.

Kathy Rabin: CFS Patient Speaker

They had invited a CFS patient named Kathy Rabin to speak. For nearly an hour she spoke of her years as a Harvard trained attorney before becoming sick while working at Massachusetts General Hospital in 1990. She read from a prepared statement, but also spoke extemporaneously. She covered key points that Straus had emphasized; stress as causative agent (which she denied for herself), depression (also denied), pharmacologic drugs for treatment (she was using or had used Prozac, Klonopin, and Elavil) that had helped her with her fibromyalgia pain and sleep difficulties. She added that exercise had helped a little.

Ms. Rabin's testimony was eloquent, courageous and sincere. Though we sympathize with her experiences, it appears that she was chosen to speak because she embodied the preordained treatment methodology being advocated by Straus, the CDC and the NIH. They should have given equal time to a patient who had recovered, since the theme of the "State of the Science" was the search for new treatments.

The year 1990 is important because it is one peak year of infection for patients on our Registry. The onset at a hospital is another sign that she was exposed to a contagion, as were many on our Registry. Ms. Rabin spoke of being tested for everything in her search for a diagnosis and treatment, without results. However, she told us that they had never tested her for mycoplasmal infections.

Mingling

During the meeting we handed out information packets to the two reporters from the Washington Times, NIH personnel, and General Accounting Office (GAO) and Congressional investigators, explaining how we had recovered using antibiotics.

Dr. Straus informed the Registry that he did not intend to transfer CFS research to NCCAM, the branch that Dr. Straus now heads. He emphasized that what was needed was to expand CFS research into various other branches of the NIH, and possibly NCCAM, as one of those branches.

William Reeves, M.D.

After introducing ourselves to Dr. Reeves, we asked for an appointment. He declined.

Charles C. Engel, Jr., M.D.

We spoke with Charles C. Engel, Jr., M.D., M.P.H, Lieutenant Colonel, Medical Corps, U.S. Army, Chief of the Deployment Health Clinical Center and Director of the Specialized Care Program at Walter Reed Army Medical Center, Principal Investigator and Epidemiologist of Clinical Trials Team Exercise Behavioral Therapy Trial (CSP 470) and Antibiotic Treatment Trial (CSP 475) the VA Nicolson Mycoplasma Doxycycline double blind Study of Gulf War Veterans, which uses the forensic Polymerase Chain Reaction (PCR) testing procedures and treatment protocol designed by Dr. Garth Nicolson.

One of our questions to Dr. Engel concerned the final compromised parameters of the study, specifically the use by the study patients of pharmacologic drugs concurrent with antibiotic treatment. Our worry was that the drugs may be interfering with recovery. We also questioned the exclusion of a test for Mycoplasma penetrans. He replied that "It would be unethical to ask the patients to stop their other drugs during the study." Dr. Engel assured us that they would note the drugs in the final published report.

Gail Cassell, Ph.D.

After the meeting disbanded, we asked the moderator, Gail Cassell, Ph.D., if we could speak to her. Dr. Cassell is a Professor of Microbiology from the University of Alabama, whose specialty is the pathobiology of mycoplasmal infections. She has been a long time advisor to the NIAID. She is Vice President of Infectious Disease Research at Eli Lilly and Company besides remaining a faculty member at the University of Alabama.

Dr. Cassell is the author of numerous excellent medical journal articles on mycoplasmas. Mary and we spent nearly an hour describing the Mycoplasma Registry's statistics, immune system supplements, and our recovery using antibiotics. We discussed scientific research that proved that mycoplasmal infections are contagious and is one main cause of CFS. Her own peer reviewed journal articles essentially confirmed the serious contagious nature of mycoplasmal infections.

Dr. Cassell was reluctant to acknowledge mycoplasmas as the cause of CFS. She did state that some were contagious, as she had written in her articles. We requested that at the next day's meeting, she should present the possibility that contagious pathogens, such as mycoplasmas, may be the cause of CFS. She made no promises.

Instead of being the moderator, Dr. Cassell should have been on the scientific panel where she could have shared her expertise about mycoplasmas. Dr. Cassell was an excellent moderator and followed the rules not to interject her own opinions.

"Thinking Inside the Box"

"THINKING OUTSIDE THE BOX" was a pretext to call in researchers (except Nancy Klimas) who played by the rules. "THINKING INSIDE THE BOX" was the intent of the meeting. This thinking was, causative agents for CFS: Stress or depression. Treatment: Pharmacologic drugs and graded exercise.

Monday, February 7

Secret NIH Meeting, NIH Campus, Bethesda

Attendees

Mary, her daughters, and we attended the entire meeting from 7:30 A.M. until 5:00 P.M. We wore our "I'M MYCOPLASMA POSITIVE" badges again. Also attending was Jill McLaughlin, Vicki Walker, Kimberly Kenney, Albert Donnay, Kathy Rabin (sitting with the scientists), Roger Burns, Meghan Shannon, and Tom Hennessy. The CFSCC, two GAO investigators and other NIH employees also attended. Mary's daughters were near the snack table coloring in their books. Later they played in the snow just outside the conference. They were once sick from mycoplasma but now they are healthy and happy children.

Into the Box!

They stuck all of us "inside the box," both literally and figuratively. As if they were punishing us for infractions of prison rules, they crammed everyone into a small room that filled to overflowing, despite an empty cavernous hall next door. Again, they allowed no patient advocates to raise questions or speak to the panel.

Dr. Reeves: Tracking Gene Expressions

Dr. Reeves took over the chair that day. He was excited about tracking specific "gene expressions" as markers for CFS, but admitted that it was all "preliminary, a fishing expedition, with little science to back it." He also declared that "stress causes Gulf War Illness."

Invited Speakers:

Joan Shaver

Dean of Nursing at University of Illinois-Chicago's College of Nursing, a sleep and fibromyalgia specialist, agreed that stress was a cause of fibromyalgia sleep problems. She discussed hydro-cortisol levels and the hormone prolactin and exercise.

Dr. Helen Mayberg

Dr. Mayberg is a brain scan expert serving on an advisory committee for the CFS Center at the University of Washington. Dr. Mayberg stated that she had never come across any grant proposals for CFS research.

Dr. Mark Demitrack

Dr. Demitrack, a psychiatrist working for Eli Lilly, made a few comments concerning medical studies on Prozac (manufactured by Eli Lilly), and left at the lunch break.

HPA-AXIS & Prozac

Discussion focused on the HPA-AXIS (Hypothalamus-Pituitary-Adrenal). Some on the panel suggested Prozac as an effective treatment. Others disagreed on its effectiveness, specifically, drug trials in America showed that Prozac helped, while trials in England and the Netherlands proved placebos were more effective than Prozac.

Dr. Simon Wessely

A United Kingdom psychiatrist, who worked with CFS patients and British Gulf War Veterans, Dr. Wessely claimed, "There is no difference between the health of Gulf War Veterans and Bosnian War Veterans." He also claimed that CFS and GWI are the same (psychological) disease, since no causative agent had been found and he was no longer looking for the cause. However, inactivity alone, in a clinical study setting, cannot recreate these illnesses.

Dr. Michael Sharpe

Wessely's colleague from England, also a psychiatrist, emphasized the psychiatric overlap in these illnesses and that they should bring in specialists of individual symptoms to investigate. Though he was not looking for the cause either, he did suggest the possibility that continuing infections might be involved.

Dr. Barry Wilson

A professor of animal sciences at the University of California-Davis, Dr. Wilson kept admitting that he had studied CFS for only two weeks, and was surprised that they asked him to attend. The CDC's Wichita Kansas population study impressed him. He mentioned neuro-muscular abnormalities in Gulf War Veterans and suggested environmental toxins might be involved.

Dr. Wilson stated that blood and tissue samples used for studies of patients were too old, and therefore useless for analysis. He recommended sophisticated protein and nucleotide screens using labeled and antibody probes. Dr. Wilson recommended that the NIH should conduct informational meetings for CFS treating physicians.

CFSCC Member

A CFSCC member stated that the committee was planning to supply their own educational literature to CFS/Fibromyalgia (FM) treating physicians. Dr. Reeves interjected by discouraging this plan.

Dr. Kevin McCulley

A physiologist from Georgia, Dr. McCulley stated that exercise may be beneficial for CFS if done in extreme moderation. He warned that athletes often had a "crisis moment" in their lives that coincided with overtraining, which precipitates a full body crash. This in turn creates a "brain/sensory organ feedback overload loop" that delays recovery. Dr. McCulley suggested a possible connection to CFS. He found the blood of these athletes hyper-coagulated.

Dr. Nancy Klimas

They invited Dr. Nancy Klimas at the last minute at the request of the CFIDS Association and the CFSCC. Dr. Klimas, a well known and respected CFS/AIDS researcher and immunologist from the University of Miami, agreed on the importance of the HPA-AXIS findings. However, she felt that the broadening of the criteria for defining CFS was weakening the chance to find the cause, most likely a virus. Dr. Klimas chided CFS researchers who "followed the money" into whatever theory was popular to gain funding and promotions in their respective fields.

Dr. William Reeves

Dr. Reeves immediately and strongly rebutted Klimas, and declared that "Finding the cause is not our task anymore, it is to alleviate symptoms." He added, "The field of CFS research has many charlatans, and they should publish a peer reviewed journal article." He finally ended by stating, "I'm surprised that any physicians treat CFS patients, they're so obnoxious. Only CFS patients send hate mail to me!"

Kimberly Kenney

Kimberly Kenney, from the CFIDS Association, questioned "the cavalier throwing of drugs at patients, such as Klonopin, that had not had studies done to show their safety and effectiveness." Everyone agreed that no studies had been done, but that they should be. Dr. Engel stated "Klonopin is in the benzodiazepine family and I will only give Klonopin to my patients for two weeks."

Dr. Lon White

Lon White is an epidemiologist in Alzheimer's and Parkinson's disease. Dr. Cassell asked him to discuss the possibility that infectious pathogens might be causing CFS. Dr. White said that "If a pathogen, such as a mycoplasma or a virus, is causing CFS, it has to be found in the brain or body first. Next, physicians should administer antibiotics or other treatment. If they note improvement in symptoms, then they should retest the patient to see if the pathogen has left the brain or body." He suggested that brain autopsies be performed on CFS/FM patients to find the precise damage done to brain and nerve tissues by the pathogen.

GAO Investigators

During breaks we spoke with the two GAO investigators, who attended both the NIH and the CFSCC meetings. Mycoplasmas are the most likely cause of CFS/FM/Gulf War Illness, we explained. The NIH and the CDC were conducting a cover up, we added, which might explain the diversion of funds and why no cure had been found in twenty years. The DoD had obtained the patents to the two most virulent mycoplasmas showing up in Gulf War Veterans and CFS/FM patients, we revealed. Gulf War Veterans may have contracted their illness from experimental vaccines given to them before they left for the Gulf War, we suggested. That could explain, we added, why they did not record shot records, had claimed to lose them or announced they were classified. Civilians with CFS/FM are now ill from these contagious pathogens.

They should extend their investigation into the NIH where they might find additional misappropriation of funds, we told them. We recommended to them that the GAO should advise Congress to remove all funding for CFS from both the CDC and the NIH, just as they had earlier advised that funding for Gulf War Illness should be taken away from the DoD. "Listen carefully to the meeting," we told them, "because you will not hear a discussion about mycoplasmas." Our prediction was accurate up to the last half hour of the meeting.

Dramatic Conclusion

Dr. Charles Engel

Dr. Engel spoke for nearly twenty minutes about a "Step Care" plan to help sick Gulf War Veterans, using questionnaires, psychological/physical evaluations, outreach centers, exercise, etc. He failed to mention the massive VA Nicolson Mycoplasma Doxycycline Study, which he is supervising.

At 4:30 P.M., the meeting nearly over, Dr. Cassell asked Dr. Engel if he would like to discuss what else he was working on. He replied, "I'd rather not." She rephrased the question, and asked if he would like to discuss his VA study. He said, "I'd like to, but I'm not an epidemiologist." Dr. Cassel said that it was probably relevant to the meeting and asked a third time, "Would you please tell the other researchers about what you are doing?"

Finally, Dr. Engel admitted that the VA study was going well, and in fact, 450 eager Gulf War Veterans had filled the study only two days previously. Dr. Engel admitted that, "40% of the patients tested positive for mycoplasma infections" and added, "In civilians, mycoplasmas are the probable cause of Chronic Fatigue Syndrome and Fibromyalgia." He hastened to add that "funding should be withheld from civilian studies until the VA study is completed in two years."

We noticed that the mood in the room changed from bored to charged. The GAO investigators, previously motionless, began furiously to take notes. Dr. Reeves appeared angry and the English psychiatrists looked depressed.

Earlier, we had asked Dr. Morens about mycoplasmas. He claimed that "They are in everyone, are not pathogenic and should not be studied." When we raised the same question to him after the meeting, he appeared dejected and admitted that "There should be a study of mycoplasmas in CFS patients." Since the meeting, they have reassigned Dr. Morens and he is no longer in charge of CFS research at NIAID.

Pressure on the DoD and VA

Our priority has always been to support an official double blind Mycoplasma Doxycycline Study, either for CFS or Gulf War Illness. Dr. Nicolson's blood tests had already discovered mycoplasmas in the blood of both Gulf War Veterans and CFS patients.

Before the current VA study, the DoD publicly denied knowledge of mycoplasmas or that they were serious pathogens. Their previous "studies," which they never published in peer reviewed medical journals, failed to find mycoplasmal infections in the blood of 6,000 sick Gulf War Veterans or Chronic Fatigue Syndrome patients.

The VA study clearly suggests that young healthy males of various races get this illness. This contradicts what the CDC and NIH have said for twenty years, "Mostly white middle-aged women contract CFS/FM."

If it were not for the public pressure on the VA and DoD to begin the Nicolson Mycoplasma Doxycycline Study by Congressmen Bob Filner (D-50-CA), Jack Metcalfe (R-2-WA), James Barcia (D-5-MI), Norm Dicks (D-6-WA), Christopher Shays (R-4-CT), and Bernard Sanders (I- AL-VT), Drs. Garth and Nancy Nicolson, Captain Joyce Riley R.N., the Mycoplasma Registry and others, the VA study would not have happened.

Dr. Reeves' Unprofessional Conduct

Dr. Reeve's comments about CFS/ FM patients were deeply disturbing to us. His contemptuous attitude toward the entire CFS/FM community suggests a far deeper institutionalized contempt within the NIH and CDC. It appeared that his various remarks were designed to bait the patient advocates. His comments may have been attempts to persuade the panel of scientists to regard CFS patients as "mental cases." Wisely, the patient advocates did not respond to Dr. Reeves.

Because of his protected "whistle blower" status, they cannot fire or transfer Dr. Reeves from CFS research. At the least, the U.S. Secretary of Health Donna Shalala should publicly censure him for his comments. The Surgeon General and Assistant Secretary of Health Dr. David Satcher who oversees the CFSCC, and Jeffrey Koplan Director of the CDC, should request that Dr. Reeves be barred from attending any future CFSCC meetings.

Civilian Mycoplasma Study Needed for CFS/FM

Dr. Engel stated, "In civilians, mycoplasmas are the probable cause of Chronic Fatigue Syndrome and Fibromyalgia." Dr. Engel oversees the most expensive, scientifically valid double blind, doxycycline treatment study for mycoplasmal infections ever undertaken, and he has said this. Why wait two more years for the results? Another study designed for civilians should be started immediately.

We need the additional study, with its own set of parameters. The VA study excludes the testing and treating of certain mycoplasma species and allows concurrent patient use of drugs that interfere with recovery. We need this additional study because even if it is successful for treating Gulf War Illness, they must scientifically validate antibiotic treatment for CFS/FM. Otherwise, physicians will still be reluctant to prescribe blood tests and antibiotics for mycoplasmal infections in CFS/FM patients.

Dr. Garth Nicolson should do the study since he developed the forensic PCR blood test and treatment protocol used for the VA study. He has already completed antibiotic treatment studies with CFS/FM and rheumatoid arthritis patients, which show that antibiotics are successful in treating their illnesses.

Recommendations to the GAO

The reason we are calling for the GAO to recommend the end of funding to the CDC and NIH for CFS research is simple. When it becomes obvious that the health organizations funded to find a cure for our illness are instead actively engaged in using those funds to prevent the finding of a cure, then the only choice left is to stop the flow of money.

We propose that the GAO recommend that an independent panel of CFS researchers be set up to oversee grant proposals. Our recommendation is given in the spirit of the "State of the Science" meetings and is definitely "Thinking Outside the Box."

A "Bullet Points" Briefing?

It appears that the CDC and NIH had given each member of the scientific panel a "bullet points" briefing designed to familiarize them with areas of research approved for discussion:

Point 1: Depression as causative agent.

Point 2: Stress as causative agent.

Point 3: Pharmacologic drugs are helpful for treatment.

Point 4: Exercise is helpful for treatment.

During their presentations, nearly everyone, except Dr. Klimas, covered these points. Speakers were either pro or con, but they did cover the points.

CFSCC Must be More Aggressive

The CFSCC should have had more to offer during the "Roundtable Discussion" and the "Group Discussion" periods in which they were invited to add their insights. They added little in the way of suggestions for future research, which was the goal of the meetings. They asked few questions of the scientists on the panel and they did not interview us about our own recovery. Unless the CFSCC members become more aggressive and effective in their advocacy for CFS patients, we recommend that the current members be replaced by those who will be.

The "Gene Expression" Theory

The "gene expression" analysis theory sponsored by Dr. Reeves, designed to find a marker in patients, appears to be the research of Dr. Howard Urnovitz. His theories on endogenous retro- viruses and "re-shuffled genes" have been around for sometime. He claims that sick Gulf War Veterans have distinctive DNA fragments that environmental toxins in the battlefield have activated. The DoD has long been supportive of his theories, despite the lack of scientific proof. These DNA fragments, as suggested by Dr. Garth Nicolson, may be mycoplasmas that have disintegrated in the blood, producing what appears to be novel viruses, which in actuality do not exist.

The CDC Rejects Peer Review Committee and Board of Scientific Counselors

Interestingly, the official CDC paper entitled: "FY 2000 Overview of the Chronic Fatigue Syndrome Program-Centers for Disease Control and Prevention," available the next day at the CFSCC meeting, discussed this research:

"The peer review committee and Board of Scientific Counselors were concerned that CFS laboratory efforts were over-committed to gene expression analysis and strongly recommended CDC develop a program to search for novel or poorly characterized infectious agents in CFS patients."

The advice of twenty-six scientists and research peers of the CDC, suggesting an increase of efforts to find an infectious agent, has been completely rejected by the CDC. The Registry agrees with the peer review committee and Board of Scientific Counselors and suggests that immediate funding be directed toward the research of mycoplasma, HHV-6a, chlamydia, rickettsia, brucella, and streptococcus, as causative agents of CFS/FM. Our Registry also recommends that research into "gene expression" be discontinued at this time.

Mycoplasma as the Unifying Theory

Mycoplasmas can cause nearly every sign and symptom discussed by the scientists and researchers on the panel. They create dysregulation of the HPA-AXIS. They cause hyper- coagulation of the blood and drain ATP function from individual cells, causing exhaustion. Mycoplasmal infections cause apoptosis (cell death) by activating "programmed death" genes within the cell. They can cause a significant mental dysfunction that is often mis-diagnosed as an emotional or psychological problem.

Mycoplasmas have been found in every tissue of the body, including the brain and the bone marrow. Once patients have used antibiotics, they recover. When they retest patients, the mycoplasmas are absent, just as Dr. White required as validation of infection. In fact, brain autopsies have already been performed and they found brain lesions, extensive cell damage, even necrosis, all of which was caused by mycoplasmas alone.

In twenty years of intense research, and millions of dollars of funding, in a branch of the NIH devoted to infectious agents, they never tested CFS/FM patients for mycoplasmas, bacteria, chlamydia, rickettsia or other infectious pathogens, only viruses. The question that must be asked is: "Why?"

Tuesday, February 8

CFSCC MeetingCenters for Disease Control

Hubert Humphrey Building Washington, D.C.

Present was David Satcher, M.D., Surgeon General and Assistant Secretary for Health (who left before Congressman Filner and the patient advocates gave their testimony), Satcher's aide, the GAO investigators, Congressional Investigators, Dr. David Morens, Dr. Nancy Klimas, Dr. Anthony Komoroff, Dr. Sam Donta, Dr. Joe Collins, various representatives from the NIH, Food and Drug Administration (FDA), CDC, and the Social Security Administration, Vickie Walker, Kim Kenney, Mary Schweitzer, Ph.D. who gave a prepared statement critical of the NIH "State of the Science" meetings, patient advocates (listed below), and Congressman Bob Filner. Forty to fifty people were in the audience.

Nicolson’s VA Mycoplasma Doxycycline Study Finds Mycoplasma in 40% of VETS

Dr. Sam Donta

Sam Donta, M.D., Professor and staff physician (Lyme Disease) at the Boston University School of Medicine, and staff physician at the Boston Veterans Administration Medical Center, and Program Director of the VA Nicolson Mycoplasma Doxycycline Study, stated that the study was proceeding well, and was filled with 450 volunteer study patients at thirty sites. The other medical researchers on the panel expressed surprise at how quickly they had filled the study and they recounted their own difficulties in obtaining volunteers for double blind studies. They wanted to know how this had been accomplished in less than a year and what the advertising budget had been.

Dr. Donta stated that 35-40% of all Gulf War Veterans in the study were testing positive for mycoplasmal infections. Of that percentage, 80% were positive for Mycoplasma fermentans, 30% for Mycoplasma genitalium, and 3% for Mycoplasma pneumoniae. The study is scheduled to be completed and published within two years.

Statistical analysis by Dr. Donta is significant in that 80% of the Gulf War Veterans who had tested positive for mycoplasmas were testing positive for Mycoplasma fermentans. We consider this the most virulent mycoplasma species in existence. In civilians, even in those with multiple mycoplasmal infections, nearly every CFS/FM patient who is infected, is positive for mycoplasma fermentans. This is a direct parallel between Gulf War Illness and CFS/FM.

The study refused to include a test for Mycoplasma penetrans, the other species the DoD obtained the patent for. Mycoplasma penetrans might have been found in high percentages of Gulf War Veterans, but now we will never know. Mycoplasma hominis is also not part of the study. It has long been our contention that Gulf War Veterans may have received classified experimental live attenuated vaccines for Mycoplasma fermentans, Mycoplasma penetrans, Mycoplasma genitalium, and Mycoplasma pneumoniae.

Therefore it is not surprising that the VA study is "discovering" these species in the blood of sick Gulf War Veterans. Some researchers have suggested that mycoplasmas may have contaminated the anthrax vaccines given to the Gulf War Veterans. We recommend that an analysis of anthrax vaccines for mycoplasmal contamination be performed by an independent laboratory.

General Mycoplasma Species Test Abandoned: "Not as Sensitive or Accurate as Hoped"

Dr. Joe Collins

Dr. Joe Collins discussed the parallel study being conducted with Gulf War Veterans who had not tested positive for mycoplasma. They are treating them with Cognitive Behavior Therapy (CBT) and exercise. After he spoke, we asked Dr. Collins for the percentage of Veterans in the study testing positive for the General Mycoplasma Species test. He replied that, "The test had turned out not to be as sensitive or as accurate as we had hoped. We discontinued using it as a screening test. Too many Veterans had tested negative on the screening test, but positive for specific species of mycoplasmas."

The statement by Dr. Collins that they had discontinued their use of the General Mycoplasma Species test as a screen is truly significant. Hundreds of CFS and Gulf War Illness patients have used this test to determine if they were infected with mycoplasmas. Often, if the test was negative, they would not have the other panel performed for individual species. Therefore many patients may be incorrect in their belief that they are not infected with mycoplasmas.

Patients who have only been tested for the General Mycoplasma Species (Family), but were found negative, should seriously consider being retested for individual species, especially Mycoplasma fermentans. Patients should stop using any antibiotics, or other mycoplasma inhibiting supplements, a minimum of one to three months before being retested. The General Mycoplasma Species test should not be used as a screening test for mycoplasmal infections.

Rapid Volunteer Response to VA Study

The Registry publicized the VA study by devoting an entire Newsletter announcing the creation of the study, the cities involved and who to contact. The Mycoplasma Registry posted this information to e-mail lists. We were interviewed on our local television stations. We persuaded the San Diego Union-Tribune to interview us. They decided to do a front page story with three articles on April 14, 1999. The articles reported on the VA Study and mycoplasmal infections in GWI and CFS patients. Before our television interviews, the VA had not made an official announcement in San Diego concerning the study, but immediately after our interviews, they held a press conference.

Gulf War Veterans volunteered so rapidly for this study because most of them had been aware of Dr. Nicolson's scientific reputation and the validity of his mycoplasma research findings. The Veterans knew of Dr. Nicolson's long struggle to persuade the DoD and the VA to start this study on their behalf. Many personally knew Gulf War Veterans who had recovered using the antibiotic treatment protocol designed by Drs. Garth and Nancy Nicolson.

Dr. Reeves' Proposals

Dr. Reeves excitedly described the CDC's intention "to study the possibility of a study about the possibility of a study to start a national Registry" to track patients with CFS/FM.

He again stated that there was little or no proof that the illness was contagious. When he briefly mentioned that the CDC may be looking for novel pathogens, he never mentioned mycoplasmal infections, but did mention HHV-6.

Congressman Bob Filner, Ph.D. Delivers Forceful Message to CFSCC

Congressman Bob Filner arrived at the beginning of the patient advocates' testimony hour. We greeted Congressman Filner and tried to introduce him to Dr. Reeves, who made an excuse not to shake hands.

Bob Filner was the first Member of Congress in history to testify at the CFSCC meeting. Congressman Filner has a Ph.D. and understands the complex medical issues of our disease. Having worked three years with Congressman Filner, we are honored to be associated with him.

Bob Filner has a long history fighting injustice. He was arrested in Mississippi in 1961 where, as a Freedom Rider, he sat at the same bus station counter with blacks in a test of the Supreme Court decision banning segregation at interstate bus and train stations. Congressman Filner was inspired to suspend his college courses and travel to the south after seeing newspaper photos of a Greyhound bus carrying nine Freedom Riders that had been fire-bombed in Anniston, Alabama.

He has long defended the rights of all American Veterans, including the Filipino soldiers who fought alongside American troops during World War II. Several years ago, Congressman Filner was arrested with Filipino veterans who had chained themselves to the Capital steps. He ran unopposed in his last election. He is currently seeking his fourth term in office.

Congressman Filner gave an intense, yet personal speech, looking into the eyes of each member of the panel, gauging the impact of his words. He was interrupted often with applause from the audience. After finishing, he sat in the front row, facing the panel, listening to the other patient advocates give their testimonies.

To Contact Congress

The Registry would appreciate CFS/FM patients thanking Congressman Filner for appearing. They should contact other Senators and Congresspersons to inform them of the facts and issues concerning CFS/FM. You are welcome to send Congressman Filner's testimony to other representatives and the media.

Congressman Bob Filner

House of Representatives

CA Congressional District 50

2463 Rayburn House Office Bldg.

Washington, DC 20515

Washington Voice: (202) 225-8045

Washington Fax: (202) 225-9073

Voice: (619) 422-5963

Email:TalktoBobFilner@mail.house.gov

URL: http://www.house.gov/filner/

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WRITTEN TESTIMONY CHRONIC FATIGUE SYNDROME COORDINATING COMMITTEE

2-8-2000

CONGRESSMAN BOB FILNER

I wish to thank the Committee again for inviting me to speak on a health issue as important as Chronic Fatigue Syndrome. I very much wished to be here for the November 2, 1999 Committee Meeting, but was detained in the House of Representatives for an important vote.

But the issues I raised back in November, in my submitted written testimony, are still with us--maybe even more so.

Last week, on February 2nd, the Washington Post reported that the CDC was apparently diverting funds from Hantavirus research as well as from Chronic Fatigue Syndrome. It appears to me that the CDC still does not "get it". A CDC researcher was quoted as saying, "How can some Congressman know better than we what the important public health issues are?"

This is a complete misunderstanding of the role of elected officials in a democracy! In fact, we may know better-by talking to constituents from our districts who are sick, by reading medical journal articles, by talking to experts on the illness, by investigating. We eventually make a reasoned judgment and direct our funding accordingly.

Of course we may not know better--and we give departments and agencies the chance to testify and to educate us. But, on the completion of this democratic process, our executive departments must carry out the legal mandates. That is democracy.

Enough of political science; let's get back to medical science.

As a senior Democrat on the Veterans' Affairs Committee, I have for some time been investigating the cause of the Gulf War illness, which I am convinced is a real and debilitating disease.

Various credible theories have been advanced. One of the most credible for the majority of the instances of both Gulf War illness and Chronic Fatigue Syndrome appears to be mycoplasma infection in the blood. Since it's being found in such high numbers in both diseases, and patients are recovering after antibiotic treatment, the simple conclusion to me is they are related diseases.

And, also according to credible studies, the mycoplasma infection is contagious.

Now, no one yet knows the true cause of Persian Gulf War Illness (PGWI) or Chronic Fatigue Syndrome (CFS)--but here is a theory advanced by credible researchers. It seems to me that simple prudence would dictate--and dictate immediately:

1) Funding research on this theory. For example, Dr. Garth Nicolson wants to conduct a double-blind study for mycoplasma on CFS patients. Why not fund him?

2) Treating mycoplasmas, found in the blood, as a reportable, contagious disease.

3) Requiring the reporting of every diagnosis of PGWI, CFS, and Fibromyalgia.

4) Making sure that America's blood supply is not contaminated with mycoplasma.

5) Getting a clear plan for the allocation of the $12.9 million previously taken from CFS research.

6) Withdrawing from circulation the current CDC handbook on CFS which makes misleading statements on mycoplasma as a cause of CFS.

What amazes me is the current so-called "treatment" of patients diagnosed with PGWI, CFS, or Fibromyalgia. They are first treated as being mentally ill, depressed or under stress, put on strong, often addictive, pharmacologic drugs, given minimal disability payments, told they have a non-contagious "syndrome"--even when other family members come down with the disease and they test positive for mycoplasma and other infections. They are then forced to fight the VA, HMO's, and health insurance companies in order to obtain antibiotics, and when they do use them and begin to recover, they are told by their respective health officials that they aren't actually sick from mycoplasma.

This Committee can truly advance a healthy America by joining me in these recommendations to the CDC.

The Beaudoin Family

Mary O'Neill Beaudoin leads the Central California CFIDS Foundation of Santa Maria, CA. Mary played her video, edited from a news segment produced by CBS News/Discovery Health Channel with Dr. Garth Nicolson. The video described her entire family's illness and recovery from mycoplasmal infections. As a biologist, Mary then spoke about her expert knowledge in immune system supplements. Nicole and Miranda also stood before the CFSCC panel with their mother, and were the youngest CFS advocates ever to testify. Mary asked Nicole to tell the committee how she felt when she stopped taking her medications. She replied "Not very good."

The Beaudoin family is the perfect confirmation of our statement that "Mycoplasmas are a family disease." Since 1988 their entire family was infected, also other family members and employees they came in contact with became infected. They had multiple mycoplasmal infections: M. fermentans, M. penetrans, and M. pneumoniae. The mycoplasmal infections were apparently passed through the placenta and their children failed to thrive. Everyone was treated concurrently with antibiotics and recovered. They have also benefitted by treating their immune system abnormalities and deficiencies. For a copy of their 52 page

CFIDS Diagnosis and Treatment Protocol contact:

Central California CFIDS Foundation

PO Box 43

Santa Maria, CA 93456-0043

tel: 805-925-3910

ORAL & VIDEO TESTIMONY OF MARY, RANDY, NICOLE, MIRANDA & BRETT BEAUDOIN

Nicolson:

The number of people that have chronic problems has sky rocketed in the last few years. The increase cannot be explained in very simple ways, so there has to be something involved in transmitting the illness.

Narrator:

For almost a decade Dr. Garth Nicolson and his wife Nancy have tested the theory that many chronic illnesses are caused by bacteria and can be contagious. Much of their research has pointed to a very small, little understood type of bacteria called Mycoplasma.

Nicolson:

These very primitive bacteria can go throughout the body. They can actually enter cells. They can interfere with the metabolism of the cells in virtually any tissue or organ. And they do so differently in different people, so it seemed like a good place to start.

Mary:

Mycoplasmas are the smallest living organisms known to man. They can hide out inside your cells and evade the immune system, so you won't have any abnormalities on a physical exam, blood tests.

Narrator:

In 1988, shortly before they were married, Mary and Randy Beaudoin began experiencing a series of minor symptoms.

Mary:

It felt like I came down with the flu and then about eight days later you (Randy) got sick as well. Then it never went away. But it progressed into being actually worse to the point where about six months into it, I thought I was going to die.

Narrator:

Doctors diagnosed Mary with Chronic Fatigue Syndrome, Randy with Fibromyalgia, two little know diseases affecting everything from the muscles to the brain.

Mary:

For me the worse part was what it did to my thinking abilities, not being able to remember or read and not being able to even add or subtract simple numbers. And of course the weakness and the pain were overwhelming. But somehow I felt that all of those symptoms that I felt in my body I could almost deal with, as long as I still had my brain. But I kind of lost all of it.

Narrator:

Prior to the onset of the disease, Mary and Randy lead active lives, including a passion for ballroom dancing. But as Mary's condition deteriorated, the couple questioned whether having children was a good idea.

Mary:

The doctors told me, "You can't make your kids sick. Go ahead, you can start a family if you want." All three of our kids were born with this disease, and they had similar symptoms that developed as the years progressed. By the time my middle child was three years old she was saying, "Mommy, I'm going to die."

Nicolson:

They are contagious. The biological agents are contagious. Now, these chronic infections are really insidious because they are so slow. By the time that you detect that you are sick, and you have signs and symptoms, you may have already passed the infection to somebody else. So we think that they're slowly penetrating into the population.

Narrator:

After ten years of steady decline and desperation, Mary Beaudoin came across Dr. Nicolson's research. With renewed hope, she had Nicolson test her entire family for Mycoplasmas.

Mary:

I had the blood test done and tested positive for Mycoplasma fermentans, penetrans and pneumoniae, three different mycoplasmas, and Randy as well. The children also then where tested and they are positive for Mycoplasmas.

Narrator:

It was the answer they had been searching for. And after nearly after a decade of unanswered questions, frustration and suffering, the cure turned out to be relatively simple; antibiotics. After a long-term antibiotic treatment, the Beaudoins got rid of the Mycoplasmas and recovered their health.

Nicolson:

The treatment with the antibiotic and the slow recovery from the condition really confirmed the fact that these were causing the problem, or a similar type of infection, really caused the problem.

Mary:

Without the antibiotics we would still be sick. Dr. Nicolson saved our family's lives.

Randy:

He gave us our lives back. The most important thing to me was getting my children well.

ORAL TESTIMONY of SEAN AND LESLEE DUDLEY MYCOPLASMA REGISTRY

We are Sean and Leslee Dudley. Three years ago we began the MYCOPLASMA REGISTRY for Gulf War Illness and Chronic Fatigue Syndrome to track patients who tested positive for mycoplasmal infections. We did so because the CDC refuses to. Mycoplasmas are pathogenic and contagious. Sixty per cent of the people on our Registry have at least one other family member who is also infected. Both Sean and myself, and the entire Beaudoin family, who are speaking today, are typical cases, since Mycoplasmas are a family disease!

We ourselves have had positive mycoplasma PCR tests from our blood, bone marrow and synovial fluid. We and hundreds of people on our Registry are recovering using long term antibiotics.

Mycoplasmal infections have been found in 60% of Chronic Fatigue Syndrome, Fibromyalgia and Gulf War Illness by Drs. Garth and Nancy Nicolson. The current VA Doxycycline study, using four hundred and fifty Veterans suffering from Gulf War Illness, uses the Nicolsons' PCR blood test and treatment protocol. The study has found that 40% of these veterans have tested positive for mycoplasmal infections. In the general healthy population, only 1-5% test positive, and they may be pre-symptomatic.

CDC researches are thieves because they stole $12.9 million dollars of our money. We demand the money be returned immediately to fund a double blind, cross over study of mycoplasmal infections in CFS/FM patients. We demand that these studies be done outside the CDC, by Dr. Garth Nicolson. It is because of the Nicolsons' heroic research that the major cause of both Gulf War Illness and Chronic Fatigue Syndrome has been found. We and thousands of others owe them our lives.

CDC researchers are liars because they claim that mycoplasmas are not contagious, despite research that indicates mycoplasmas can be passed to others through saliva. Mycoplasmas are capable of infecting all cells of the body. Fresh blood products, which do not require mycoplasma testing, could also contain mycoplasmas from pre-symptomatic donors. Mycoplasmas can even pass through the mother's placenta into newborns, where they cause serious illnesses, septicemia, even death.

CDC researchers are corrupt because their polices on CFS conforms to the dictates of the Department of Defense, not the Congress of the United States. Mycoplasma fermentans incognitus and Mycoplasma penetrans, the two most virulent mycoplasmas known, have had their virulence enhanced by bio-engineering. Patents for these two mycoplasmas were obtained by the Department of Defense, yet the DoD officially denies that mycoplasmas cause disease. The DoD used doxycycline to treat patients infected with Mycoplasma fermentans incognitus as far back as the 1980's, while CFS and GWI patients with this infection have gone untreated for two decades.

CFS patients have been the unknowing victims of a biological weapons experiment. The CDC is deliberately withholding antibiotics from us, just as your predecessors withheld penicillin from black men with syphilis in the Tuskegee experiment.

Because of your actions, we call for an extension of the GAO investigation of the CDC, into the NIH, where there may be even greater misappropriation of funds. We demand that all future research funding for CFS be taken away from the CDC and NIH just as the GAO recommended that all funds for Gulf War Illness be taken away from the DoD. We also call for open Congressional Hearings on illegal experimentation on civilians, military personnel and prisoners.

We are grateful to Senator Reid and Congressman Filner for their request to the United States Attorney General calling for a criminal investigation.

This is the May, 1999 CDC Handbook for Chronic Fatigue Syndrome. This handbook should be entitled,

"HOW NOT TO RECOVER FROM CHRONIC FATIGUE SYNDROME!"

We demand that you recall this handbook because it recommends that patients not be tested for mycoplasmal infections. The revised version will recommend that patients be tested for various bacterial, viral and mycoplasmal infections, including HHV-6, Chlamydia pneumoniae and others. Positive test results for these infections will not be used to exclude a diagnosis of CFS, as they are now. Systemic infections are the cause of CFS.

Our Registry does patient follow ups and we discovered that nearly every pharmacological drug the CDC recommends in this handbook, prevents recovery from mycoplasmal infections. No medical studies exist to justify these drugs for use with CFS. However, research does prove that these drugs suppress the immune systems of healthy people. CFS patients' immune systems are already severely suppressed. The CDC deliberately creates addicts in order to prevent recovery and to ensure a steady customer base for pharmaceutical companies.

We ask that CDC employees step forward to tell the truth about the real misappropriation of funds at the CDC and the real causes of Chronic Fatigue Syndrome.

Thank you.

Sean & Leslee Dudley

Patent and VA Study Verify Mycoplasmas as Cause of CFS

Dr. Sam Donta said that they were finding that 80% of the Gulf War Veterans who had tested positive for mycoplasmas were infected with Mycoplasma fermentans species. Our testimony declared that the DoD had obtained the patent to this mycoplasma. Our previous testimony submitted to the CFSCC on November 2, 1999, had informed the committee that the patent, first applied for in 1986, stated that Mycoplasma fermentans incognitus is "The cause or cofactor in Chronic Fatigue Syndrome."

Dr. Engel had admitted the previous day during the NIH meeting that, "In civilians, mycoplasmas are the probable cause of Chronic Fatigue Syndrome and Fibromyalgia." Evidence on the side of mycoplasmas as a causative agent came from experts of the DoD and the VA.

CDC "Chronic Fatigue Syndrome" Booklet

Our stand against the various prescription drugs recommended in the May 1999 CDC "Chronic Fatigue Syndrome" booklet is from personal experience with patients on our Registry. We have witnessed the torment of overdose and withdrawal pain from "non addictive" medications. Research confirms our observation that these drugs interfere with antibiotic absorption or efficacy, and suppress the immune system. The CDC has no studies to justify their recommending these drugs to patients.

In Japan, low natural killer cell function is considered a marker for CFS. The other immune system tests that the CDC dismisses, have been extremely useful for physicians in their treatment of specific immune system abnormalities using dietary supplements.

The CDC booklet recommends that patients not be tested for "mycoplasma incognita." It should have read "Mycoplasma fermentans incognitus." The CDC has conducted studies of this species with the DoD and should know the correct spelling. CDC studies verify the virulence of this species, and they should not have excluded it as a causative agent in CFS/FM.

Taken together, the suggestions in the May 1999 CDC "Chronic Fatigue Syndrome" handbook, must be considered a deliberate attempt by the CDC to disseminate misleading information about CFS and it's treatment. The booklet is essentially an expanded version of the "bullet points" expounded by Dr. Stephen Straus: Causative agents for CFS: Stress or depression. Treatment: Pharmacologic drugs and graded exercise.

Other Patient Advocates' Testimonies

The CFS/FM community should commend the other patient advocates chosen to speak. They were courageous and informative. The speakers included Albert Donnay, Roger Burns, Meghan Shannon, Jill McLaughlin, Jim Toomey (whose statement was read by Tom Hennessy), Paula Carnes (who shared her time with Dr. David Hall, a psychiatrist with CFS), Christy Gaffey, and Joyce Weinberg (by video). Each had valuable and heartfelt messages to deliver. Most of the speakers have generously distributed their statements on the Internet CFS lists.

A simple count of the speakers who testified that they had tested positive for mycoplasmas, had been helped by antibiotics or supported this treatment, totaled six. This is significant, since the lottery created to pick these speakers was randomized.

Visit to Congressman Filner's Office

Congressman Filner returned to his office down the block. The meeting was nearly over, we decided to visit his office to thank him again and to meet his aides, who had always been so helpful. Congressman Filner's speech had emotionally moved many patient advocates and they spontaneously decided to join us. When we walked the long corridors of the Rayburn building, Tom Hennessy was so excited that even with his cane, he outpaced us all.

Congressman Filner was kind enough to let us all squeeze into his office, though he had to keep his scheduled appointments waiting. Everyone thanked him for his testimony and shared their personal stories.

Our Thanks and Gratitude

First, we would like to thank all of those on our Registry who supported us financially for our trip. Without your help we would not have attended these meetings.

Thanks also goes to Mary and Randy Beaudoin and their special daughters, Nicole and Miranda, because their presence spoke to the attendees of these meetings, saying "Children get CFS too." They understood that their testimony at the CFSCC meeting will help other children like themselves.

Thanks again to Paula Carnes, Dr. David Hall, Tom Hennessy, Jill McLaughlin and Pam Willenz, whom we finally got to meet in person and who helped us during our stay in Washington, D.C.

Most of all, we want to thank Congressman Bob Filner for his compassion and strong moral stand that he has taken to help all of us. We appreciate all the time and effort he has personally given to the victims of both Chronic Fatigue Syndrome and Persian Gulf War Illness. It will be because of Dr. Filner's efforts in getting the VA to do the Nicolson Mycoplasma Doxycycline Study that victims can recover.

The Beginning of the End

The Mycoplasma Registry was begun three years ago for one purpose, to help other CFS/Fibromyalgia/Gulf War Illness patients recover their health and their lives. In this, we have been successful. Many people on our Registry are in the process of recovery. However, this illness is not easily overcome. It is relatively easy to catch, but very difficult to cure, the worst possible combination.

Antibiotics as Treatment

For some patients, antibiotics produce complete recovery. For others, antibiotics are an effective treatment that greatly improves their lives. There are various explanations for the different responses from patients, including the length of the illness before starting treatment, the number of mycoplasma species found in the patient, other infectious agents present including chlamydia pneumoniae and HHV-6a, the patients' strict adherence to the treatment protocol, correct dosages, using the most effective antibiotic for individual mycoplasma species, the use of prescription drugs by patients that interfere with absorption or efficacy of the antibiotics, reinfection from other untreated family members or pets, and many other reasons. Not to be forgotten is the fact that the disease itself has been bio-engineered to be both virulent and antibiotic resistant

Learning the Lies

Our understanding of the connection between Gulf War Illness and Chronic Fatigue Syndrome gives us an advantage. We have learned what some of the lies are. Therefore, we no longer make requests to the CDC, NIH, DoD, or the VA., we make demands. Since the Registry's inception, with our lectures, Newsletters, and personal contacts, we have shared our knowledge of the origin of and treatment for mycoplasmal infections.

Using our Registry database, we have learned what treatments aid or prevent recovery, and why. Dr. Garth Nicolson includes our research findings in his information packets.

Our database will be quantified soon and we will publish the results. Our plan is to present it to the CDC, NIH and other health organizations, not just to inform them, but to shame them, and to inspire others to take mycoplasmal infections seriously.

Demand Full Congressional Hearings

The pressure on Congress, the GAO, the Senate, the Justice Department and others must be continued in order for them to conduct a thorough investigation that does not stop at the loss of a few million dollars. Demand a criminal investigation by the Department of Justice. Demand open Congressional Hearings on the entire history of research funding for CFS. Demand that research into bacterial, viral and mycoplasmal infections of CFS patients begin immediately. Demand to know why the CDC defies the recommendations of its own peer review committee and Board of Scientific Counselors. Dr. David Morens and Dr. Brian Mahy have recently been reassigned. Unfortunately, since we still have not learned why they were reassigned, celebration is premature.

"Unfinished Work"

As we were leaving Washington, we visited the Lincoln Memorial and the Vietnam Veterans Memorial. Reading the Gettysburg Address, inscribed in the marble, we felt a passage summed up the trip and our duty to the victims of Chronic Fatigue Syndrome and Gulf War Illness:

"It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us..."

We Especially Thank the Following People Who Made this Trip and the Newsletter Possible

Mary & Randy Beaudoin, Daniel Blick, Jan A. Cohn, Melinda Dixon, Susanne M. Erdley, Virginia M. Fleming, John, Mary & Christie Fritz, Sophia Deborah Heller, Carole Kammen, S.D. Layton, D.C., Patricia A. Lynch, Laurie MacPherson, James C. Merritt, Elizabeth Naugle, Drs. Nancy & Garth Nicolson, Maureen Oakley, D.C., Edward J. Olsen, Lloyd Malcolm Pearson, Inez Petersen, Stuart Ratner, Capt. Joyce Riley-Vonkleist, Sherree Riley, Kathleen Roberts, Steve Lee Magenheimer, Arden Sleadd, Robert C. Snyder II, Monika R Steimle-Ferguson, Diana Trimple, Vicky & Richard Ward, Pamela Willenz, Marcie Wood

MYCOPLASMA REGISTRY for Gulf War Illness & Chronic Fatigue Syndrome

Sean & Leslee Dudley

303 47th Street, J-10

San Diego, CA 92102-5961

tel/fax: 619-266-1116

E-mail: mycoreg@juno.com

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