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Chronic Fatigue and Immune Dysfunction: Who Took the “ID” Out of CFIDS?

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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?

Benjamin Natelson.

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.

About Erica Verrillo

Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. She has published three middle reader fantasies with Random House: Elissa's Quest, Elissa's Odyssey and World's End. Her short stories have appeared in Million Stories, Front Porch Review, 180 Split and Thema.
  • http://slightlyalive.blogspot.com Mary Schweitzer

    If you’ll look at the list of authors on the Australian study, you will find Dan Peterson of Incline Village, NV (where one of the best-known outbreaks took place in 1984-85), who has been collaborating with Staines. Peterson has used natural killer cell dysfunction as a biomarkers successfully for years, but NIH has consistently refused to fund any studies. He also uses the 37kDa Rnase-L defect; SPECT scans, fMRIs, spinal taps, and VO2 MAX stress tests. Those of us who fit the immune dysfunction/persistent viral infection subset of the patient population already have our biomarkers, if only CDC and NIH would pay attention. Most of Peterson’s patients have EBV involvement and/or persistent infections with beta herpesviruses: HHV-6A, cytomegalovirus (CMV or HHV-5), and/or HHV-7. He treats these with immune drugs and antivirals.

    As for the disappearance of the [ID] in CFIDS, it happened, IIRC, as a kind of an unspoken compromise for being willing to start using M.E., with a focus on the neurological category G93.3 in ICD-10.

    With all the information we have had for years (actually, decades) about beta herpesviruses and Coxsackie B (an enterovirus, of the polio family of viruses), it about drove me crazy to read all those headlines insisting there was “no evidence of viral involvement in CFS or M.E.” when the retrovirus research was squelched.

    Hopefully the successful publication of the Staines-Peterson collaboration is a harbinger of better news to come.

    Thanks for bringing this to everyone’s attention.

  • Erik Johnson

    I can answer that.
    “CFIDS” never was officially adopted or “officiated” into the medical literature by an authorized medical body, so it was never was anything more than a colloquialism.
    Seymour Grufferman suggested patients use CFIDS to impress doctors, but as this was not an official term, it has no “authoritative standing”
    “CFS” is, and remains the operative terminology.

  • http://slightlyalive.blogspot.com Mary Schweitzer

    If I can add another comment, one advantage to CFIDS, pronounced “See-fids” (aside from the reference to something medical!) was that it was easy to say. Neither “CFS” nor “chronic fatigue syndrome” is particularly easy to say, so instead of saying “Sea-fids,” we get “chronic fatigue” without “syndrome” attached, which is awful, but even our friends in the clinical and research world often drop “syndrome” when talking casually (and, unfortunatelely, that spills over into public use). But it is hard to push your doctor to say “Sea-Fids” when you’re already pushing for recognition of M.E. [I remember years ago my son said "Sea-fids? That sounds like something that'd get in my aquarium!"].

    So what do people think about that dilemma? How do you simultaneously encourage the use of CFIDS and recognition of M.E.? (FWIW, my own website, badly in need of updating, has been cfids-me.org for over fifteen years – but I can’t take credit fir that; it’s leftover from the short-lived organization WECAN (the Worldwide CFIDS-ME Action Network – the membership voted for the name), which was around from 1996 through 1999. Sigh.

  • Erik Johnson

    A name for anything automatically brings up the question, “To what was this name given?”

    If you ask what “CFIDS” was given to, it is “The Disease”, which leaves CFIDS wide open to being whatever the people who voted on the name happen to think “The Disease” is.

    “CFS” is a bit more restrictive.

    This was a term applied by the CDC’s Holmes committee to a database of evidence generated during an investigation into a particular illness outbreak…. and “speculatively” to other outbreaks, which may or may not have been the same.
    To be determined by further study into the matter.

    Change the name and you also change the people it was who gave it, and what the name was given to.

    Sometimes that changes everything.