Is SEID Dead?
The Centers for Disease Control held a public "phoner" last Thursday November 2, as it does every so often. You've probably heard a few: speakers give short presentations and the agency reserves some period of time at the end of an hour for questions from the public, in this case, the last ten minutes. Sometimes they're funny; sometimes they're boring; sometimes they're kind of stirring. When CDC reps allow live humans to phone in and, unfettered, express their concerns, the pathos and injustice of the last thirty years eventually rises to flood level as each speaker seems to gather strength from the one before. The contrast with the tomb-like silence of agency scientists--or as I think of them, "crisis management specialists"--is wide. Their often hapless attempts to respond to legitimate if shocking accusations makes for cathartic drama.
The CDC has listened to enough blues, rags and hollers for one lifetime if the last call is any indication. The questions, purportedly read from submitted emails, sounded canned. When CDC's Beth Unger, who is chief of the Chronic Viral Disease Branch (CVDB), Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases, responded to questions directed at her, she seemed to be reading from a script.
If there was any news to come out of the latest call, it was this: Three members of the Institute of Medicine committee who participated in writing the report on ME/CFS that was released in January 2015--doctors Lucinda Bateman, Peter Rowe and the distinguished committee chairwoman, Ellen Clayton--regret having proposed a new name for the disease, the notorious “SEID,” short for "Systemic Exertion Intolerance Disease.”
The IOM was commissioned by the CDC and a few other federal health agencies to undertake a review of the existing literature on ME and propose diagnostic criteria. Memorably, Stanford's geneticist Ron Davis, who sat on the committee and read some of this literature, ended up pronouncing it crap, and I think that's a direct quote. So be it.
Those who followed the IOM controversy recall that hardly anyone, aside from the people on the committee who dreamed it up, liked the name SEID. Patients who had been suspicious of the proceedings even before deliberations got underway were the most vociferously opposed.
The guests who participated in the CDC's latest phoner voiced their regret that the controversy that erupted over the name upon the release of the IOM report overshadowed critical information about diagnostic protocols in the report itself. Beginning with Vanderbilt University's Clayton, they responded to an anonymous query presumably sent via email either before or during the hour-long roundtable: "In hindsight, what do you wish the IOM report had done differently?"
“You know, truthfully,” Clayton responded, “if there was any one thing--we were asked to come up with a new name for the disorder--and although I think the new name was appropriate for describing what’s involved in this disease, I think that ultimately it was a bit of a distraction.”
Lucinda Bateman, MD, of the Bateman-Horne Center For ME/CFS and Fibromyalgia in Salt Lake City, Utah, followed up in stronger terms: “What I might have done differently” she said, “is to have put more emphasis on what’s required to make the diagnosis, and less emphasis on applying a new name. The release of the report and the content was undermined by the conflict (surrounding) the name. It was unfortunate, there was opposition to the IOM report after (the controversy) was started. We should have downplayed the name and put more emphasis on people reading the content and learning how these diagnostic criteria evolved.”
Peter Rowe, a pediatric specialist in ME who had just completed an exceptional presentation on issues of postural orthostatic intolerance and related autonomic dysfunction in the disease, weighed in on the matter, too.
“I still remember the blog (about the report) in the New York Times,” Rowe said with near palpable dismay in his voice. “There were two-hundred and fifty comments on the blog about the name SEID. One of them asked, ‘Didn’t they realize that SEID spells “dies” backwards?’”
One might be forgiven for assuming any name that shoved “CFS” out of the public eye would be welcomed and maybe that was the committee’s fond hope. After all, little could be worse than “chronic fatigue syndrome" unless it was “Yuppie flu” or “hysterical woman syndrome” or something equivalent. ME sufferers were loathe to warm up to SEID, however.
CDC’s first attempt in 1988 to recast the disease from myalgic encephalomyelitis to something benign and even unworthy of study afforded the federal government a three-decade hiatus from having to spend any money or perform any research. One result was the casting of hundreds of thousands of ailing Americans in the prime of their lives into what would turn out for many to be life-long poverty or dependance on social welfare.
From an exclusively clinical perspective, however, the biggest deficit of the name "CFS" was its isolation of one aspect of the disease to the exclusion of the rest, nearly all of which are more important. Encephalitis, lymphoma, deranged immune systems and cardiovascular damage occasionally leading to death, for instance--can we agree these are clinically more important than fatigue?
SEID was similarly flawed. Yet again, it named the disease after a single facet of the malady. Was exertion intolerance the only commonality to be found among patients? Or even the most important? Worse, to the lay ear, "intolerance" had a dubious ring to it--wouldn’t the public assume once again the problem was volitional, as in, "I simply won't tolerate exertion!"
The backlash didn't come from patients exclusively, however. Writing in US News and World Reports, doctor and columnist Gary Kaplan opined, "The IOM proposed the name Systemic Exertion Intolerance Disease to replace CFS. While I completely agree that a name change is necessary, as many consider CFS to be both stigmatizing and/or trivializing, SEID is not appropriately descriptive. It does not speak to the underlying complex pathophysiology of the disease but remains descriptive only of what is now regarded as the hallmark symptom – post exertion malaise. The World Health Organization regards CFS as a neurologic disease, and the International Consensus Criteria regards it as an immunological mediated neuro-inflammatory disease with multi-system manifestations. The term Myalgic Encephalomyelitis speaks to the pathophysiology and is accepted worldwide. ME does not carry a negative connotation, and I believe it should have been accepted by the IOM."
Take that, IOM!
Bottom line, most patients who know very much about the history of their malady agree this disease has had a perfectly adequate medical name for several decades. I suspect most patients would accept any name that replaced ME as long as it was an obvious improvement, however.
CDC’s need, even after thirty years of imposing “CFS” on sufferers, to rename it yet again--as if ME was, as the CDCs Beth Unger might say, “too scary”--seemed spurious. (Unger publicly insisted last year the Canadian Criteria were “too scary” for clinicians.) The exercise had a kind of sickening aspect to it, akin to some long-buried trauma rearing its head unbidden. The episode harkened to the seriously bad old days, the Straus years, wherein the name of the game at the Department of Health and Human Services was obliterating the disease, starting with dumbing down the name.
Interestingly, SEID has gone nowhere. One sees it every so often in the odd press report written by journalists who aren’t exactly “in the know” on this subject, not that one can blame them. To be “in the know” requires a grasp of successive events that are all but unbelievable. Mostly, SEID has the feel of an effort that quickly fell flat, and two years later, its creators are publicly disavowing it on a platform provided by CDC. Further, after listening to IOM members disown the topic the other day, my guess is few if anyone will have the desire to pump air into SEID a second time.
Little has generated more upset and anger over the last few decades than the government’s efforts to recast ME as something it is not. The fact that even the IOM authors, starting with its chairwoman Ellen Clayton, would like to cut the cord on SEID and let it waft away into the cluttered realm of dead-ends, ruses and misfires that have attended this disease since it’s epidemic spread in the early 1980s, is a promising development.
Perhaps SEID has gone the way of the Hindenburg. If only I could say the same of CDC. At any rate, it's possible the entire episode has proved to the government that the victims of this disease finally have the clout to kill another “anything-but-ME” naming project. With luck, ME will stand unmolested long enough to recover its original legitimacy.