To me, the greatest advance for the estimated 2.5 million adults, adolescents, and children with chronic fatigue syndrome (CFS) has been the slow but steady acceptance of its very existence by the conventional medical community. This has been a real uphill battle and we’re encouraged to finally see some (guarded) victories.
The first description of what would be later called chronic fatigue syndrome came in 1934 from the UK, where it was thought to be a variation of polio. It was called epidemic neuromyasthenia.
When polio was ruled out, the condition was renamed myalgic encephalomyelitis (ME) in the 1950s. Later, when it occurred in the US in the wake of mononucleosis (the kissing disease), the name morphed into chronic Epstein-Barr infection.
Associated with emotional depression and overwork, for a while it was called the yuppie flu. This sounded more than a bit judgmental, so ultimately chronic fatigue syndrome (CFS) was agreed on. Later, when immune abnormalities were found, it was re-christened CFIDS (chronic fatigue syndrome immune dysfunction syndrome).
The actual reason for all this variation in naming was because not all CFS-ME-CFIDS patients had either the same clinical features or the same lab test abnormalities.
Finally, in 2015, the Institute of Medicine (itself recently renamed the National Academy of Medicine) renamed the whole syndrome systemic exercise intolerance disorder (SEID). This reflects the condition’s single most consistent symptom: physically overdo anything and then you crash…and badly.
Finally, provisional acceptance
At least many physicians are accepting that CFS exists, even if they’re not doing much about it. This certainly was not the case a few years ago.
Confession: I owe the initial success of WholeHealth Chicago, back in the 1990s when we were called Chicago Holistic Center, to the Rheumatology Department over at Northwestern, which consistently told their CFS and fibromyalgia patients that nothing was wrong with them and to see a psychiatrist.
(Ironically, when a Northwestern pharmacologist developed the fibro drug Lyrica and Northwestern began banking tens of millions of dollars in royalties, that same department began to call itself a “center of excellence” in fibromyalgia management.)
But while provisional CFS acceptance has moved physicians beyond the oft-heard CFS mantra, “Your tests are normal. I can’t find anything wrong with you. Maybe you should get therapy,” CFS patients justifiably remain a very unhappy group, waking up every morning hoping this will be the day when they’ll start feeling stronger, just a little bit stronger, or they’ll read about some new breakthrough in a CFS chatroom.
The major stumbling block to such a discovery has been the lack of substantive progress in finding a single cause of CFS. And as much as both doctors and patients would like a major CFS breakthrough to be announced, none has emerged.
New CFS therapies
That may sound disappointing, but looking for a variety of possibilities has opened up a range of new and often effective therapies. Ironically, finding a dozen or so possible causes for CFS has also led to what can only be described as a minority/majority conflict among physicians.
Here’s a list of some (though certainly not all) of the major suspects that have emerged as causes of chronic fatigue. For each, I’ve provided a few words about the therapies we use at WHC and a common response from majority doctors who oppose the diagnosis.
This list begins after common causes of CFS (anemia, kidney/liver disease, diabetes) have been ruled out:
—Chronic viral infections (including Epstein-Barr, Cytomegalovirus, HHV-6).
Treatment: Immune rebuilding (the viruses survive by suppressing natural immunity) combined with antiviral therapy.
Opposition: “Many people have chronic viruses and are fine. Don’t treat.”
—Chronic Lyme and other tickborne illnesses (history of exposure, evidence of chronic inflammation, positive or equivocally positive tests).
Treatment: Immune rebuilding (Lyme also suppresses immunity) and antibiotics/herbs sufficient to treat resistant forms of Lyme.
Opposition: “No firm evidence of infection. Don’t treat.”
—Chronic inflammatory response syndrome (CIRS) from a genetic susceptibility to the toxins of certain mold species.
Treatment: Remove mold from environment. Use binding agents to remove toxins.
Opposition: “Never heard of it. Don’t treat.”
—Chronic toxic metal buildup (mercury, lead, etc.).
Treatment: Reduce exposure, use metal removing agents.
Opposition: “Never heard of it. Don’t treat.”
—Food intolerances, leaky gut, intestinal parasites including candida.
Treatment: Heal gut, eliminate parasites/candida, create healthy microbiome.
Opposition: “Fad diagnoses, don’t waste your money.”
Are you getting the picture? Separately, each of the scenarios listed above can mimic aspects of the original CFS descriptions we’ve seen over the past 50 years. Some, like Lyme and the viruses, are associated with muscle pain (fibromyalgia). Others don’t have pain as a feature, but do include fatigue and digestive symptoms (gluten sensitivity, for example).
What’s really needed is for doctors to agree on a consistent checklist of diagnostic possibilities and appropriate tests. Rather than simply telling patients, “Well, yes, this looks like chronic fatigue syndrome,” they should also add, “Okay, now let’s get to work.”
David Edelberg, MD