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CDC and NIH Discrepencies Continue

CDC spokespersons appear to believe that an apology for "accounting errors" is sufficient to close the books on the behavior of the agency towards the disease Chronic Fatigue Syndrome (CFS) and its victims. Nothing could be further from the truth. There are numerous discrepancies between information that has been provided by CDC at public meetings of the CFSCC (Chronic Fatigue Syndrome Coordinating Committee of the Department of Health and Human Services), and information that has been given Congress, the media, and the nation's Executive. I wish to highlight three major examples to demonstrate the depth of remaining problems within CDC with regard to appropriate attention to a disease CDC has acknowledged to be "a significant health threat to American women [1998]," and "one of the top five priorites for CDC with regard to new and reemerging diseases [1995]." [Click here to read the full report by the Inspector General of DHHS, "Costs Charged to CFS Research at CDC."]

Here are three examples of serious discrepancies between CDC's reports to patient advocates and what has apparently been stated by CDC in other venues. In the context of the Inspector-General's recent report, I believe that this is strong evidence CDC will do little to make amends for the misdirection of funds intended for CFS research, and that CDC plans to return to "business as usual" with regard to CFS. At the November 2, 1999, meeting of the CFSCC, the CDC continued its refusal to apologize for anything more than an "accounting error." It appears it will take more than an internal DHHS investigation to change entrenched behaviors towards CFS and its victims.

1. On April 29, 1998, a significant exchange took place between Dr. Brian Mahy, Director of the Division of Viral and Rickettsial Diseases, NCID, CDC, and Dr. William Reeves, Chief of the Viral Exanthems and Herpesvirus Branch within that Division, during a public meeting of the CFSCC. Dr. Mahy was serving as Acting Chair of the CFSCC; Dr. Reeves had just presented CDC's report on activities related to CFS. Dr. Mahy claimed that the CDC spent $1.2 million on laboratory equipment in FY 1996; Dr. Reeves denied having spent any funds on laboratory equipment at all. This exchange appears in the official written record of that meeting as well as in the notes of public attendees at the meeting. However, in its response to the audit by Inspector-General of DHHS, CDC explicitly claimed that no such exchange took place.

Excerpt from the Official Minutes of the April 29, 1999, Meeting of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) of the U.S. Department of Health and Human Services (DHHS):

"Ms. [Kim] Kenney [President of the CFIDS Association of America and patient representative on the CFSCC] informed the committee of the CFIDS Association's pursuit of a more detailed accounting of CDC's expenditures. The CFIDS Association felt that information provided by CDC Financial Management Office (FMO) Director William H. Gimson left many important unanswered questions which had been shared with members of the House and Senate. For example, the report cited 1996 supplies and equipment expenditures of $1.2 million at the Branch level and $74,000 at the Division level. Ms. Kenney stated that she participated in a 1996 CDC peer review and there were no laboratory studies reported for that year. Ms. Kenney requested that Dr. Mahy tell the committee what the $1.2 million for laboratory supplies and equipment was spent on that year. Dr. Mahy responded that certainly there were laboratory studies in 1996 and requested that Dr. Reeves confirm that. Dr. Reeves responded that his branch was not doing laboratory studies in 1996 that he was aware of. He stated that the molecular program was begun in 1997 and the Branch was primarily analyzing results that were obtained in 1994. ... Ms. Kenney further stated that she had a list of many other questions and just wanted to make the committee informed that the line of inquiry she would be pursuing through the CFIDS Association through the HHS office and with members of Congress."

Excerpt of statement by the CDC in response to the DHHS Inspector General's report on "Costs Charged to CFS Research at CDC" [ Click here to read the full report.]

"To: June Gibbs Brown
Inspector General
[page 2 of 3]
The time line in the second paragraph is not correct. CDC requests that the first sentences of this paragraph be deleted. [Apparently they were, because the comment in question does not appear in the final draft of the report. Why?] During the April 1998 meeting of the Chronic Fatigue Syndrome Coordinating Committee (CFSCC), the Branch Chief made no allegations concerning the use of CFS funds. On July 21,1998, when CDC became aware of allegations, CDC immediately contacted the Inspector General to request this review.
Jeffery P. Koplan"

I am not sure why the dates are so important to the CDC, but from the perspective of a public member of the audience at that meeting, it was quite clear that Dr. Reeves openly denied Dr. Mahy's explanation of how much money had been spent on CFS, in the context of the stated concern by Kim Kenney, a patient advocate on the CFSCC, that this money had been diverted elsewhere. Dr. Reeves would offer no explanation of how the money could have been spent on CFS; he insisted that he did not spend it on laboratory equipment as Dr. Mahy had just stated; and it would have been hard to draw any conclusion other than we had just watched a government employee state publicly that his boss was giving out misleading information. This was particularly troublesome because Dr. Mahy was the Acting Chair of the CFSCC at the time. CDC claims to have known nothing until Dr. Reeves formally requested whistleblower status. It is perhaps understandable that Dr. Mahy would not have informed his superiors of the accusation just made against his own integrity, but we believe the CDC should display more concern over his having remained silent. Given that the exchange is recorded in the written minutes of that meeting, we find it most peculiar that CDC has insisted in writing to the Inspector General that the exchange never took place. Furthermore, high-ranking officials from other federal agencies were present at this meeting. Why did no one from the NIH, the FDA, the SSA, or Public Health report to Secretary Shalala that this exchange had occurred? Public attendees at the meeting found it highly significant; why didn't other government representatives?

2. At the November, 1997, meeting of the CFSCC, Dr. William Reeves announced in his report of CDC activities that as a result of the findings of the "Wichita Study," he would have to revise his estimate of the prevalence of CFS to 400,000 Americans. However, Reeves withheld this information from the media, it never appeared on the CDC's official website, and it was deleted from the written record of the meeting. I am not sure I understand how statements made in a formal report at a public meeting can be excised out of the record, but I am sure the original statements can be found in the audiotape of the meeting that should still be in the possession of the CFSCC secretary. I have requested a copy of the audiotape twice but no one has responded to the request.

When asked why the new estimate of 400,000 was not being released to the public, Dr. Reeves responded that if the new figure were given out to the public, then the Wichita surveillance research would not be published in a major journal. The new figures were revealed a year later, in October 1998, after the study was accepted for publication by a peer-reviewed journal. In the meantime, CDC published a revised version of their widely-distributed CFS brochure -- one month before Reeves made his "formal" announcement of the revised estimate. Consequently, the revised estimate is not included in the new brochure. If timing was so important, then surely the publication of the brochure could have been held for one month to ensure accuracy. Where were the new estimates? Why are older estimates still being circulated by CDC?

At the October 1999 CDC meeting with patient advocates to discuss ways to make amends for the misallocation of funds, patient advocates asked that CDC immediately begin a media campaign to inform the public of the prevalence and severity of the disease. We believed this would be an expensive way to help the public catch up with time lost because of the diversion of funds. At the CFSCC meeting this past November 2, 1999, however, Dr. Reeves stated in his report of CDC activities that informing the public was very low on his list of priorities, and that for now it was not on the agenda at all.

During discussion, it came out that some members of the Committee and CDC do not want the public to be informed of the prevalence or severity of this disease until there is a "marker" (such as a blood test) that can easily "prove" who has it. Their emphasis on "science" translates into a misguided concern that fakes could claim to have the disease and thereby seek public money. An observer notes that the victims of CFS are themselves innocent of any wrongdoing, and if it is criminal activity that concerns CDC and the CFSCC, they should turn their concerns over to those in government charged with prosecuting criminals. It is the job of CDC to inform the public of the best current information about diseases; it is not their job to try to protect SSDI, private disability carriers, or employers from suspected "shirkers." An observer suggested that CDC make use of the three physicians on the CFSCC panel, all of whom seem to have no difficulty diagnosing the disease in their private practice. There was no response to this suggestion.

The misinformation in the press because of the inattention paid to this disease by CDC is significant. There is a fifty-fold discrepancy between the latest CDC prevalence rates and the rates listed at the NIH website, and too frequently quoted by the press. CDC has done little to correct the continued reporting of false statistics with regard to CFS prevalence, and apparently has little intention of doing so in the near future. This summer (after this observer had requested at every CFSCC meeting since October 1997 that the NIH website be changed) , a single sentence appeared on the NIH website, stating the official prevalence rates are held by CDC, with a link to CDC's CFS home page. While it would have been a simple matter to have added that "the CDC currently estimates that the disease affects 400,000 Americans," this was not done.

n order to find the current estimate, the reader must go to the CDC's CFS home page at: http://www.cdc.gov/ncidod/diseases/cfs/cfshome.htm, click on "hot topics", then click on "April 29, 1999, CFSCC Meeting Agency Update," then scroll through the text to find the statement: "We now estimate that 238 per 100,000 adults 18-69 years of age in Wichita have CFS." Then the reader has to refer to a calculator (and know how many people in the U.S. are between the ages of 18-65) to find that this would imply that 400,000 Americans have the disease. There is no direct link on CDC's CFS home page to current demographic estimates. Hence, most readers who go to the NIH website and is referred to the CDC's page will return to the NIH site and continue to use the estimate 4-10,000 Americans, which grossly understates the current CDC estimate of over 400,000 Americans.

The researcher without access to internet has recourse only to printed booklets issued by the NIH and the CDC. The NIH handout for physicians continues to state "4-10,000 patients nationally." The CDC handout, revised in September 1998 (one year after Reeves used the 400,000 figure in his oral report to the CFSCC) is better, but it continues to display far more uncertainty than the state of knowledge at CDC warranted:

"One of the earliest attempts to estimate the prevalence of CFS was conducted by the Centers for Disease Control and Prevention (CDC) from 1989 to 1993. Physicians in four U.S. cities were asked to refer possible CFS patients for clinical evaluation by medical personnel participating in the study. The study estimated that between 4.0 and 8.7 per 100,000 persons 18 years of age or older have CFS and are under medical care. However, these projections were underestimates and could not be generalized to the U.S. population since the study did not randomly select its sites. A more recent study of the Seattle area has estimated that CFS affects between 75 and 265 people per 100,000 population. This estimate is similar to the prevalence observed in another CDC study conducted in San Francisco, which put the occurrence of CFS-like disease (not clinically diagnosed) at approximately 200 per 100,000 persons. In general, it is estimated that perhaps as many as half a million persons in the United States have a CFS-like condition."

The choice of the term "CFS-like" rather than "CFS" is significant - in other publications by the CDC and in public appearances, it is made clear that CFS is a minor subset of "CFS-like" conditions ("other fatiguing conditions," "idiopathic fatigue"). CDC writers at the time had full access to the results of the Wichita study concluding 238 per 100,000 Americans had CFS, not just "CFS-like conditions." Why did CDC choose to publish information suggesting much lower figures, when they had better estimates at their disposal?

One month after the publication of the CDC's CFS Facts brochure, Dr. Reeves announced at a public conference in Boston that CFS was a "significant health threat to American women." Dr. Reeves stated that "Women accounted for most of the cases, with a prevalence of 356 per 100,000. Almost all of these cases occurred in white women, in whom the prevalence was 394/100,000." This figure is notable for three reasons. First, CDC has the only demographic studies that find such a disproportionate ratio of female to male prevalence rates (over 9:1, as opposed to the 6:4 ratio found in the larger DePaul study recently). Second, the rate of CFS the CDC found in "white women" was nearly identical to the rate the DePaul study found for all participants, regardless of ethnicity or income. Finally, one would think such a strong statement about the danger of this disease to American women would have been more highly publicized by CDC, but after for Dr. Reeves' oral presentation at the AACFS meeting in Boston in October, 1998, nothing more was said publicly.

In 1997 Congress mandated three demographic studies to be undertaken by the CDC: a study of prevalence rates in adolescents; one of prevalence rates in different ethnic and minority groups; and a third study of the implications of CFS in pregnancy. None of these studies was ever performed. Dr. Reeves reported in November 1998 that the adolescent study was begun that summer, and then shut down for lack of funds. These would be the very funds that were diverted to other projects. The funds were available, but Dr. Mahy shifted them to other projects.

According to Reeves' testimony at the November 1999 CFSCC meeting, the pregnancy study will not be reinstated at all. Adolescent and minority studies will have to wait for over two years, when a new national study is planned to begin. Dr. Reeves admitted that no funds have yet been set aside for that new study.

It would seem logical for the adolescent, pregnancy, and minority studies to have been among the first programs to be reinstated by CDC as part of their supposed plan to return the misspent CFS funding, since funds allocated explicitly for these studies were among those that were clearly diverted elsewhere. However, Dr. Reeves stated that his own research indicates the disease is not a serious problem among adolescents or minorities, and therefore such studies have been relegated to the bottom of the priority list.

Two weeks before the November meeting, a new demographic study by Dr. Leonard Jason et al from DePaul University, " A Community-Based Study of Chronic Fatigue Syndrome," was published in the prestigious Archives of Internal Medicine [1999;159:2129-2137]. Click here to read the study. Jason's study used a larger sample and stronger techniques than those used by Dr. Reeves in the Wichita studies and took over two years to complete. The new study estimates that 800,000 Americans (including adolescents) have the disease. Jason's study is consistent with three other demographic studies (in Seattle, San Francisco, and an earlier study in Chicago) in finding that the disease is at least as prevalent among minorities and people of low income as it is among whites and people of higher income; the Jason study also indicates that the disease is reaching "crisis" proportions among adolescent girls. Dr. Reeves and the CDC are alone in continuing to insist that CFS is a disease of middle-aged, upper-middle-class white women, but it is Reeves' Wichita study that is always used in CDC releases. This is the reason that patient representatives - and our representatives in Congress - specifically asked the CDC to address adolescents and minorities. In this context, it was inappropriate for Reeves refer to his own work to justify the CDC's continued refusal to comply with Congress's direct request for adolescent and minority prevalence studies.

In conclusion, CDC's claim of a new era of cooperation with the public and with Congress, with regard to CFS spending, does not quite ring clear. Three groups that have been ill-served to date by CDC studies - adolescents, minorities, and pregnant women - will continue to suffer from the diversion of spending away from projects originally funded by Congress on their behalf.

What is the result of the behavior of the CDC (and the NIH and the FDA) towards CFS? Both Reeve's Wichita study and Jason's new DePaul study came to the same conclusion: Ninety percent of CFS patients have not been diagnosed and are receiving no treatment. Is this not a public health crisis?

When 90 percent of the population remains undiagnosed with a disease the CDC itself calls "significantly disabling," the CDC's "apology" for "accounting errors" seems terribly inadequate. If nothing more is done, the CDC intends to return the misspent funds to CFS projects over a period of four more years. They have said nothing about completing the projects that were to have been finished by now. No one has said a word about needing more funding in the face of demographic estimates that have been revised upward fifty-fold over the past five years.

What will it take for something to be done?

Mary Schweitzer, Ph.D.
CFS/M.E. patient

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Mary Schweitzer's Essays on CFIDS/M.E.
Example of CFSCC Meeting Minutes