Despite efforts by the U.S. Congress to bring federal health agencies in line with the public's concern about CFS/CFIDS, both the NIH and CDC continue to behave as if on-campus interests were all that mattered.
The CDC will not publicize the results of their own Wichita survey, which led to an estimate of 500,000 persons in the United States, because it is still awaiting publication. One presumes they believe it will not have received the imprint of scholarly science until it has been published in a peer-reviewed journal --yet, they continue to ignore research that has already been published in such journals, when it has been conducted off-campus - that is, "outside-the-beltway. The most glaring example can be found in their refusal to publicize the dePaul demographic study, conducted by Leonard Jason et al, which was recently published in the Annales of Internal Medicine. This two-year study concluded that as many as 800,000 Americans may have Chronic Fatigue Syndrome, that it affects all income and ethnic groups equally, and (as in the Wichita study), that 90 percent of Americans had not bee diagnosed.
Either the CDC has special information of use to the American public, in which case they should not be waiting for a journal publication but releasing the results now - or refereed journal articles provide the best test of current scientific knowledge, in which case the DePaul study results should be publicized now. Either way, there is no excuse for the absence of a clear, up-to-date demographic estimate on either the CDC or NIH websites. Yet one will search in vain for anything written after 1995.
If anyone had doubts as to the insularity of the NIH community, they were dispelled when the NIH secretly put together a "State of the Science" conference that was to help inform NIH decision-makers about the current status of research on CFS. In planning the conference, they invited only four "experts: Stephen Straus (of NIH), Mark Demitrack (of Eli Lilly), Simon Wesseley (from the UK), and Michael Sharpe (also from the UK). All are strongly biased in favor of the beliefs that CFS/M.E. is caused by "stress" and is a form of psychiatric illness they call "functional somatization;" Straus and Demitrack recommend SSRI's (Prozac) and "stress reduction," Wessely recommends traditional psychiatric talking therapy, and Sharpe recommends "cognitive behavior therapy;" all four recommend exercise. These are the only therapies any of the four acknowledges as valid.
After protest by the Chronic Fatigue Syndrome Coordinating Committee (CFSCC), an advisory group chartered by Congress in 1997 to coordinate activities within the different agencies of the U.S. Department of Health and Human Services (DHHS) - including NIH - the name was changed to an "Internal NIAID Consultation." Dr. Nancy Klimas was added to the list of invited participants eight days before the conference was to be held, but she was not permitted to give a presentation (although unlike other observers from the CFSCC, she was permitted to speak up). It goes without saying that she was not a participant in the planning of the meeting.
Our concern did not stem from a particular dislike of any of the four participants (although members of the NIH communicated afterwards that they thought personal taste was the reason we objected to the choices). One of the four would have been fine - after all, their perspective need not be excluded. However, by choosing only these four, the
The narrow perspective voiced by Straus, Demitrack, Wessely and Sharpe can only harden the existing biased picture of CFS/M.E within the NIH. This meeting is not insignificant; NIH has stated that the intention is to "teach" NIH decision-makers "about CFS." The meeting will have a strong influence on future NIH policy towards the disease, research funding, and the plight of patients. As Jon Sterling (former president of the NJ CFS Assoc. and current patient representative on the CFSCC) stated in a formal letter of protest, "the view of these 'experts' would take us back to 1991 in terms of scientific progress in CFS research."
It is both perplexing and shocking that NIH ignored the expertise of the three official medical representatives to the CFSCC (the Congressionally-chartered Chronic Fatigue Syndrome Coordinating Committee of the U.S. DHHS) in both the planning and outcome of the meeting. Perplexing in that the idea for such a meeting originated within the CFSCC, but NIH took command and explicitly rejected any input from the body that is supposed to be coordinating DHHS policy on CFS; shocking that any effort at a true "survey of the science" would deliberately exclude these three highly-respected researchers: Dr. Anthony Komaroff (Harvard), Dr. Peter Rowe (Johns Hopkins), and Dr. Nancy Klimas (Miami). The NIH has relented and will permit them to attend (though they informed them too late for Komaroff to be able to be there) - but Rowe and Klimas will be permitted there only as "observers," not as "participants."
Recipients of NIH external grants for CFS research in the past five years were also deliberately excluded. When asked why, NIH responded that "they would be prejudiced." One wonders, then, why Straus and Demitrack have been included, because they have been beneficiaries of internal NIH grants for years - and unlike external grants, internal grants are given without competition or the requirement of professional peer review. Indeed, it has been years since Straus has won an external NIH grant to study CFS. If the experts chosen by peer review for NIH grants are viewed as so unprofessional as to be able to discuss their research in perspective, why have Straus - who also has his own research agenda - and Demitrack - who not only shares Straus's research interests, but is himself external to NIH - been included? Why have two British researchers been brought in? What on earth is going on?
Bluntly speaking, Stephen Straus has had influence on the U.S. government's interpretation of CFS far beyond any accomplishments in the way of research; he is a virologist, but his one foray into a virological cause of CFS (what he once called Chronic Epstein-Barr) turned into a highly-publicized failure. Since then, his focus has solely been on psychological causation - well outside his own area of expertise. Ironically, Straus and Demitrack's last published research found patients with CFS/M.E. to have below normal levels of cortisol, when a theory of psychological causation should have produced the finding of above normal levels. Straus has thus ignored even the results of his own research when it has contradicted his prejudiced beliefs about this disease. To include only Straus, his research partner, and two allies from the United Kingdom in their personal battle to focus on psychological causes as the sole basis of CFS, is grossly insulting to the entire CFS/M.E. community - both patients and professionals.
The bulk of published peer reviewed research on CFS today occurs not in psychiatry, but in the fields of neurology, cardiology, immunology, endocrinology, and biochemistry - as a quick search of Medline will confirm. To repeat: none of these fields have been included in NIH's so-called "State of the Science" meeting. Given the recent uproar over misspending at the U.S. Centers for Disease Control, it is stunning that NIH would so blatantly disregard the wishes not only of the CFS/ME research and patient community, but the U.S. Congress and DHHS's own Chronic Fatigue Syndrome Coordinating Committee (CFSCC). The medical representatives on the CFSCC, explicitly excluded from this conference, have substantial peer-reviewed publications and are on the faculty of highly-regarded medical schools: Dr. Anthony Komaroff of Harvard has numerous publications demonstrating neurological damage in CFS; Dr. Nancy Klimas of Miami has a substantial publication record in the immunology of AIDS and CFS; and Dr. Peter Rowe, a cardiologist at Johns Hopkins, counts among other peer reviewed publications the only complete research article on CFS that has appeared in the prestigious Journal of the American Medical Association, an essay demonstrating the role of dysautonomia (autonomic nervous system dysfunction) in CFS, which was published in JAMA in the fall of 1995. Dr. Klimas also manages one of three federally-funded CFS research clinics; the other two were also ignored. Dr. Benjamin Natelson and his staff at the New Jersey CFS Clinic have produced numerous peer-reviewed publications in the fields of biomechanics, neurology, and immunology; Dr. Dedra Buchwald's CFS clinic in Seattle, Washington, has produced important research on demography and genetics; she is currently working on a study of twins to isolate the genetic makeup of patients with CFS. None of these researchers are proponents of the theory that CFS can best be described as "functional somatization;" indeed, Natelson's group has published several studies demonstrating that psychological causation cannot explain the symptoms of CFS/M.E. (none of which is referred to in Straus's work).
What can you do? Write, FAX, telephone, and/or email your Congressional representatives and NIH secretary Donna Shalala to request that the meeting be postponed until a true state of the science, balanced, collection of experts from all fields of medical expertise can participate. Call family and friends and ask that they do the same. Write CNN, ABC, NBC, CBS, FOX; your local media outlets; popular columnists; Oprah Winfrey. Washington-area PWC's should write to the Washington Post requesting a good investigative reporter be assigned to find out why Stephen Straus has been permitted to exercise such control over government spending on this disease, given his clear bias toward psychological causation (hypochondria) and overt disdain for the research of others. Ask why NIH has been permitted to completely ignore the research experts appointed to the Congressionally-chartered CFSCC. Ask whether our representative government has finally been replaced by a government of barricaded autocratic bureaucrats. And if you live outside the United States, ask your nation's government to lodge a formal protest against this travesty of justice.
Please note change in location (and name) of meeting: The "Internal NIAID Consultation" (formally the "State of the Science" meeting) on CFS is now scheduled for the Bethesda Marriott in the Maryland suburbs of Washington, D.C., beginning Sunday, February 6, at 3 pm, and continuing all day Monday, February 7. Get there if you can, with literature from professional peer-reviewed medical journals to distribute to participants. If you are barred from the meeting, call the media and tell them what is going on, and that you have been barred.
On Tuesday, February 8, the CFSCC will meet at the Hubert Humphrey Building (DHHS headquarters) in Washington, DC. It is probably even more important that whoever amongst us can attend the February 8 meeting, to which the public is explicitly invited, find a way to get there to demand an explanation in person for such shabby treatment. (I have to have an Ampligen infusion Monday, but I will be there Tuesday, February 8.) I hope to see a room that is filled to overflowing with PWC's and their supporters.