Does anyone remember CFIDS, aka Chronic Fatigue and Immune Dysfunction Syndrome? Back in the 1990s this was the accepted term for what is now called CFS, or, if you are so inclined, ME/CFS. The “ID” was quietly dropped by researchers and doctors about 10 years ago in favor of Steven Straus’s infamous legacy: chronic fatigue syndrome. Everyone agrees that CFS is a confusing, misleading and utterly dismissive name for the illness. Not only does it harm the people who have CFS, it harms the people who don’t. In a recent study of patients newly diagnosed with MS, nearly one-third had been diagnosed with CFS (or with the even more vague, “fatigue”) for one to two years prior to being diagnosed with MS.
Imagine how many other patients with incipient cancer, heart disease, liver disease, diabetes (to name a few “fatiguing” illnesses) have had the catch-all diagnosis of CFS slapped on them simply because they were tired. The term CFS has been just as much a curse to those patients, whose correct diagnoses and treatments have been delayed by years, as it has been to patients with CFIDS.
Who did this? Who managed to drop the all-important feature of immune dysfunction from the name? After all, it is obvious that people with CFIDS have an immune dysfunction. Chronicity is, in fact, the product of an altered immune system. With a fully functioning immune system, the host recovers. Immune dysfunction is not just a feature of chronic disease, it is its definition.
What’s more, the furor over what to call the “Disease of a Thousand Names” has only intensified since the “ID” dropped out. Prior to its deletion, people who had been diagnosed with (depending on their geographic location) ME (myalgic encephalomyelitis) or CFIDS maintained a cordial relationship. Since the change, they are at each other’s throats. People with ME do not want to be diagnosed with an illness that not only reduces all their symptoms to the “f” word, but is doggedly lumped into some ill-defined category of mental illness.
Who did this? Who managed to divide what was once a unified community into squabbling sororities? The CFIDS community could, and did, accomplish so much when it spoke with one voice: national organizations, political lobbies, well-subscribed magazines. Now, it is factionalized, torn apart by the desire to achieve maximum distance from the stigma of “fatigue.”
An even more disturbing consequence of dropping the “ID” is that supposed friends, clinicians who once championed the cause, have not only slipped into the term CFS, but are adding insult to injury by dropping the S part and referring to an illness which not only destroys lives, but can eradicate them, simply as “chronic fatigue.” It’s bad enough when patients call their illness “chronic fatigue,” but Nancy Klimas, head of the Neuro Immune Institute and world-renowned CFIDS specialist, should know better.
Who did this? Who trivialized this illness among formerly committed researchers and clinicians? Who robbed CFIDS patients of their defenders?
In 2002, Benjamin Natelson, noted CFIDS researcher, was given a grant by the NIH to do a meta-analysis of immune studies in CFIDS patients. Meta-analyses are not research studies, they are merely analyses of studies that have been performed in the past. Because meta-analyses basically serve as CliffsNotes for researchers who are too pressed for time to read the original work, their ultimate value to the research community has been questioned.
Natelson’s meta-analysis, entitled “Evidence for the Presence of Immune Dysfunction in Chronic Fatigue Syndrome,” examined 79 studies of immune function in CFIDS patients. Natelson found that that there was no consistent immune dysfunction. Some studies indicated that there were increased pro-inflammatory cytokines, others found increased anti-inflammatory cytokines.
Given the fact that one of the hallmarks of CFIDS is waxing and waning symptoms, this should not have come as a surprise. The immune dysfunction that characterizes CFIDS is that it both under- and over-responds. This is the ultimate outcome of the loss of homeostasis which lies at the heart of the illness.
Natelson ignored this aspect of immune dysfunction, just as he ignored the one consistent piece of data he found across these studies: low natural killer (NK) cell function. He concluded that “the available evidence does not support chronic fatigue syndrome as being due to any consistent immunological dysfunction […] we believe that the term “chronic fatigue syndrome” is preferable to the older “chronic fatigue and immune dysfunction syndrome.”