Mary Schweitzer's Testimony to the CFSCC

Mary M. Schweitzer's Testimony

I wish to enter the strongest protest to the choice of experts at the "Internal NIAID Consultation" (formerly the "State of the Science Meeting") with regard to Chronic Fatigue Syndrome (CFS) held yesterday by the National Institutes of Health.

The reasons for my protest are:

1. The four experts represent the same point of view. It would have seemed more reasonable for different approaches to research regarding CFS to have been presented to the outside experts at the meeting. Drs. Straus, Demitrack, Wessely, and Sharpe believe that CFS is a form of "functional somatization." I wish to know why there was no one there to represent the research that has been published in peer-reviewed journals such as the Journal of the American Medical Association in the areas of cardiology, endocrinology, immunology, and biochemistry.

2. None of the three medical representatives to the CFSCC were asked to contribute to the meeting in any way; indeed, when they were finally permitted to attend, it was as observers only. They were not allowed to speak. If the medical representatives to the CFSCC are not to be consulted when the NIH puts together an "internal" consultation to present to non-specialists, what purpose does the CFSCC serve?

3. None of the three research scientists who head federally-funded CFS research clinics were asked to contribute to the meeting in any way.

4. Dr. Morans stated that he explicitly excluded researchers who had received NIH grants because he believed they would be "prejudiced." The four researchers who were permitted to speak are hardly disinterested parties.

Let me continue with specific objections to the four who were chosen - in the context that they were the only researchers chosen.

Dr. Mark Demitrack is the research partner of Dr. Stephen Straus. Hence, his views would be expected to echo Dr. Straus's precisely. Both Dr. Demitrack and Dr. Straus have received grants from the NIH, and although Dr. Straus is on the NIH staff, Dr. Demitrack is an executive with the pharmaceutical company Eli Lilly, the makers of Prozac, which Dr. Demitrack and the NIH have frequently recommended for patients with CFS (including pediatric patients), to the exclusion of other valid treatments.

Dr. Simon Wessely and Dr. Michael Sharpe are heavily involved in political debates currently going on in the United Kingdom over the use of the term Myalgic Encephalitis (M.E.) rather than the use of "CFS." M.E. has been in contiguous use in the UK since the mid-1950s to describe the illness that is best defined in the U.S. as CFS (although there are notable differences in the definitions: CFS-1994 emphasizes "fatigue," whereas Dr. Ramsay's M.E. definition emphasizes neurological difficulties). Dr. Straus flew to the UK to assist Drs. Wessely and Sharpe in their endeavours, implicitly placing the imprint of the U.S. NIH upon their use of the term "CFS" as globally correct.

However, Drs. Wessely and Sharpe do not use the same research definition for CFS as is used by the U.S. Centers for Disease Control. I testified directly to the Surgeon-General on this issue last April. The research definition that Drs. Wessely and Sharpe use corresponds more closely to the CDC's definition of "chronic fatigue" - not "chronic fatigue syndrome" - an important distinction, because the bulk of patients with "chronic fatigue" actually have mood disorders.

Dr. Wessely informed me personally that I could not have CFS because I also have Neurally Mediated Hypotension (NMH). He said that any patient with a physical impairment would never reach his doors at the CFS clinic he runs in the UK. I will note that we have a tautology here: he sees patients who have no physical problems; and he insists that CFS patients therefore have no physical problems. If a diagnosis of NMH excludes one from a diagnosis of CFS, then the referees and editors of the Journal of the American Medical Association must have been mistaken when they accepted the article written by Dr. Peter Rowe of Johns Hopkins specifically noting that NMH is a characteristic of CFS.

In a public exchange at the AACFS Research Conference in Boston, October 1998, Dr. Michael Sharpe stated that 5 percent of the population could be expected to have CFS. The U.S. CDC, however, estimates that only 0.2 percent of the population has CFS. Hence, when Dr. Sharpe puts together a sample of 100 "CFS" patients according to his definition, only 4 of them would actually meet the CDC's definition of CFS! I strongly urge this body to initiate the use of the terms CFS-CDC and CFS-UK to distinguish between these very different definitions, as the resulting research only clouds (rather than edifies) our knowledge of the disease.

I would finally like to point out that when I testified last November to the CFSCC about the infestation of HHV-6a found in my leukocytes last year, and that after six months of treatment with the experimental drug Ampligen all traces of HHV-6a DNA were gone, Dr. Straus immediately spoke up to state that "only three researchers in the United States are competent to do PKR analysis and therefore it is doubtful that I had HHV-6a to begin with, let alone that Ampligen eradicated it." As it turns out, the researcher in whose study I am a participant is Dr.Dhavram Ablashi, who was the co-discoverer of HHV-6 while working with Dr. Gallo at the NIH. I would like Dr. Straus to state for the record whether he retracts his denigrating comments about my experiences with HHV-6a and Ampligen, or whether he does not believe Dr. Ablashi is capable of this type of research.

Finally, Dr. Straus is an expert in virology. By his own statements, he believes that this disease is not caused by a virus. I would like to know why Dr. Straus did not turn over research in this disease to the National Institutes for Mental Health when he drew this conclusion, but has instead continued to receive funding to study a disease which he himself admits is beyond his area of professional expertise.

Copyright Mary M. Schweitzer, Ph.D. ©

[Eight days before the meeting, after pressure from advocacy groups and the public members of the CFSCC, Dr. Nancy Klimas was added to the conference participants. Dr. Klimas is a medical representative to the CFSCC; has received NIH grants for her immunological research on AIDS and CFS; and runs the newest of the three regional CFS research centers that have been created by the federal government.]

At the CFSCC meeting, the NIH implied that our criticism of the breadth of research represented at the meeting was unfair, because Dr. Nancy Klimas was included. However, Dr. Klimas was not involved in any way in the planning of the meeting, and she was the only "expert" not permitted to give a formal presentation. In fact, she was not invited until eight days before the meeting, after the protests of the CFIDS community had been received by Congress and Secretary Shalala.

Dr. Klimas (Miami), an immunologist, is not only a medical representative to the CFSCC, but also runs the newest of the three federally funded CFS research centers. While we were pleased to see her permitted to comment during the meeting, our criticism still stands.

The NIH should have AUTOMATICALLY included her in the planning from the beginning, along with the other two representatives on the CFSCC: Dr. Anthony Komaroff [former president of the AACFS and a Harvard internist with publications on brain abnormalities in CFS] and Dr. Peter Rowe [a Johns Hopkins pediatrician with publications linking dysautonomia and CFS, including the fall 1995 JAMA article referred to above]. They should have AUTOMATICALLY included the other two directors of research centers on CFS: Dr. Benjamin Natelson of the NJ College of Medicine in Newark, and Dr. Dedra Buchwald of the University of Washington in Seattle, who also is a former president of the AACFS. The AACFS itself, the U.S. professional association for researchers who specialize in CFS, was also ignored.
At the CFSCC meeting, an NIH spokesperson complained that some "scientists" were uncomfortable speaking freely with "outsiders" present to observe the meeting on Sunday and Monday [February 6-7]. We wonder precisely who was so "uncomfortable," and what they would have said had no one from the U.S. CFS community been present to offer an alternative perspective (and point to peer-reviewed published research that continues to be censored within the NIH). Sadly, it appears that all the NIH learned from this incident was to strive to further barricade itself from peer-reviewed published research conducted by off-campus (non-NIH) researchers at high-level universities and medical schools.

As a further indication of NIH's intentions with regard to CFS research and the critique of qualified outside scientists, Dr. Morans, who planned the February meeting, has left the CFSCC entirely. However, he will remain in charge of the distribution of CFS funding within NIH!

Despite the agreement to hold a new "State of the Science" meeting in November, directed this time by the CFSCC, it appears that the internal meeting of February will remain the decisive factor in how funding is distributed within the NIH. The only difference is that there will be no one present at the CFSCC meetings to answer direct questions about funding decisions.

From statements Dr. Morans made at the CFSCC, I would conclude that the upshot of this meeting is the following: there will be no funding for internal research on CFS at NIAID (the National Institute for Allergies and Infectious Diseases); it is possible that funds for research may go to NIMH (the National Institutes for Mental Health).

But the most logical new home for internal research on CFS (if there is any at all) within NIH will be the new Center for Complementary and Alternative Medicine, coincidentally run by Dr. Stephen Straus.

In the United States, we still have far to go to open federally funded health research centers (CDC, NIH, and FDA) to the full array of professional, peer-reviewed, published research by scientists at highly-respected universities and medical centers. Protests over the "State of the Science" meeting at the NIH in February came and went; hearings on the misdistribution of funds from CFS to other projects at the CDC -- they remain insignificant irritations to these entrenched bureaucracies. A meeting, an apology, and a return to business as usual.

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