I have Chronic Fatigue Syndrome (CFS) and although I am mostly interested in how to heal from it (and live with it), I am also interested in CFS in general.
And that includes the label and how people may perceive CFS based on the label.
It’s easy to understand why CFS became the popular name for the condition. It’s simple, catchy, and relatively easy to remember. And it was created before the condition was well understood. (Not that it is well understood even now.)
And yet, the name itself can lead to misunderstandings.
Is it chronic? Yes, in the sense that it’s often long lasting. But people do heal from CFS, even after many years of illness, and with a diagnosis and symptoms that match all the criteria. Often, it requires working with specialists in the field and using a holistic and comprehensive approach.
Is it mainly fatigue? Yes, fatigue is a major component. But it’s far from just a longer lasting form of regular fatigue. It typically includes a lot of additional debilitating symptoms such as worsening after any (physical or cognitive) exertion, brain fog (a sense of “cotton in the head” along with impaired cognitive function and executive functions), aches and pain, digestive problems (leaky gut), hypersensitivity (to light, sounds, chemicals), and more. There is a long list of sometimes obscure, inexplicable, and weird symptoms shared by most or many of the people who are diagnosed with CFS.
The condition is not created by what causes regular fatigue. Often, it comes after an infection, typically Epstein-Barr.
And what can bring recovery is different from a regular fatigue. Rest is important but not sufficient. Often, a comprehensive approach is needed focusing on nutrition, learning to navigate life with the illness, and in general supporting our system in recovering in any way possible. For me, this support comes from a combination of rest, nutrition, working on emotional issues, mindfulness, energy work and so on.
Is it a syndrome? Yes, it is a syndrome since there is that long list of symptoms. I suspect it’s called a syndrome mostly because the condition is not well understood. Most illnesses have many symptoms without being called a syndrome, so when we understand it better and know more about what causes it, we may well give it a name that doesn’t include the word “syndrome”.
So what about the name chronic fatigue syndrome? The name can give the impression that it’s a longer lasting case of regular fatigue, and perhaps that its causes and remedies are similar to those of regular fatigue. But that is far from reality. The symptoms are more and different, the causes are different (although not fully understood), and what helps recovery is different.
A couple of days ago, I saw a discussion thread in a Facebook group for a more general healing modality (Vortex Healing). Some people responded with suggestions that seemed to assume that CFS is a variation of the regular fatigue most people experience now and then. And that was the seed of this article.