Fellow sufferers and other people who know the illness myalgic encephalomyelitis may have noticed something missing from this blog: the three letters CFS. This is a very deliberate omission on my part.
To understand this, one has to again look at the history of myalgic encephalomyelitis. In short, the term myalgic encephalomyelitis (or ME) dates back to the middle of the last century and in 1969, the illness was classified by the WHO as a neurological disease.
The term “chronic fatigue syndrome (CFS)” originated separately in the US. In 1988, a CDC-convened group proposed CFS as a new name for what had been called “chronic Epstein-Barr virus syndrome”, after evidence increasingly argued against Epstein-Barr virus as its specific cause. Over the following decades, ME and CFS increasingly became conflated, while different diagnostic criteria continued to exist for both.
The problem with CFS is that it reduces the illness to an unspecific symptom (fatigue) that is also seen in other illnesses like MS or cancer. And it minimizes the severity of the illness. We are all tired sometimes. We have all fallen into bed completely wiped after an exhausting day.
Calling myalgic encephalomyelitis “chronic fatigue syndrome” is like calling dementia “chronic forgetfulness syndrome” or Parkinson’s “chronic shaking syndrome”.
This is why many patients, clinicians specializing in myalgic encephalomyelitis, and researchers want to change the name.
One could just go back to the original name. Completely different names have also been proposed like systemic exertion intolerance disease (SEID). A broader term that has emerged more recently is post-acute infection syndromes (PAIS), which includes myalgic encephalomyelitis of infectious onset alongside other post-infectious illnesses. Both approaches have good arguments in favor of them, but also some against.
For example, both shift the focus away from fatigue, but PEM is not simply exertion intolerance, and PAIS excludes cases of myalgic encephalomyelitis that were not caused by an infection.
So, nothing has stuck so far, and the terminology remains complicated. There are discussion about whether “CFS” should be used at all and whether “myalgic encephalomyelitis” accurately describes the underlying pathology. And that does not even include disagreements about whether someone who meets both, the WHO criteria for Long Covid and the International Consensus Criteria (ICC) for ME, has Long Covid, ME, or both; claims that SARS-CoV-2 does not cause ME at all; claims that Long Covid is an entirely new entity that should not be conflated with ME; or the fact that, historically, different diagnostic criteria have been used for “CFS” and “ME”, and a person can meet the criteria for CFS but not ME.
As a patient who has an illness that is not widely known, including within the medical community, and who is asked “What do you have?” that leaves me with the question of how to answer.
In the WHO version of the ICD-10 we find:
G93.3 Post viral fatigue syndrome
Myalgic encephalomyelitis
Most specialized clinics, clinicians, researchers, and publications, but also many patients, use ME/CFS. One clinician once proposed using ME/CFS as a name in and of itself, without trying to attach meaning to the letters, like with malaria. We now know that malaria (“bad air”) is not actually caused by bad air, but the name stuck and that is just what the illness is called now.
Personally, I decided to use the original name in its full form: “myalgic encephalomyelitis”. I have to explain the illness anyway, whether I say “ME” or “ME/CFS”. But by not mentioning CFS or fatigue at all, at least I avoid the “Oh, fatigue! So, you are tired all the time?” trap, where people stop listening because they think they know the illness, and I get a chance to describe the illness starting with its hallmark characteristic and most disabling aspect: PEM.