CDC and NIH Discrepencies Continue about CFS

[Guest guest]

November 1999

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Schweitzer's Essays on CFIDS/M.E.

Example of CFSCC Meeting Minutes

http://www.cfids-me.org/marys/cdcprobs.html -------------------------

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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.

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1. On April 29, 1998, a significant exchange took place between Dr.

Mahy, Director of the Division of Viral and Rickettsial

Diseases, NCID, CDC, and Dr. 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 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.]

" 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.

[...]

(signed)

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?

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2. At the November, 1997, meeting of the CFSCC, Dr. 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 De

study recently). Second, the rate of CFS the CDC found in " white

women " was nearly identical to the rate the De 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 et al from De 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. '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. '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 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 's new De

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?

Schweitzer, Ph.D.

CFS/M.E. patient

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Contact the author.

Go to the CFIDS/M.E. Information Page

Schweitzer's Essays on CFIDS/M.E.

Example of CFSCC Meeting Minutes

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