Earlier this year, a panel at the Institute of Medicine took a closer look at chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) to ask what, precisely, this medical issue is — and whether the names currently in use are appropriate. The 15-member panel found something that people with the condition — whatever you call it — already knew, which is that yes, it is a real syndrome that can be diagnosed through a constellation of symptoms. They also decided to rename it, labeling it systemic exertion intolerance disorder (SEID). Their findings are important for a number of reasons.
The first is probably the most obvious: SEID has long been a laughingstock, pointed to as a ‘made-up’ condition, labeled as ‘yuppie flu’ and treated with extreme dismissiveness. In addition to being hurtful to people experiencing very real symptoms and associated health problems — like fatigue, cognitive impairments, poor sleeping, and severe exhaustion after exertion (not ‘wow, that was an intense run, I feel pretty tired’ but ‘wow, I did 15 minutes of work in the garden and I need to go lie in bed for three days now’) — the dismissive attitude had serious social implications.
Refusing to recognise SEID meant that people had trouble accessing accommodations, for example. Patients with the condition might not be able to take time off from work, or adjust work duties to accommodate fatigue. Those with additional symptoms like chronic pain might have trouble getting appropriate treatment, with care providers claiming that ‘there’s nothing wrong’ and ‘it’s all in your head.’ This contributed to significant quality of life problems for patients who needed compassionate and comprehensive care, not a mandate to toughen up.
Many people felt that ‘chronic fatigue syndrome’ wasn’t a good fit when it came to naming because it made the condition seem kind of trivial, and it also made it difficult for people to understand. Everyone feels tired now and then, after all — but patients tried to articulate that the fatigue others experience is not the same. A corollary can be seen in discussions about mental health, where depressed people have to explain that while yes, everyone is sad now and then, it’s not the same thing as chronic depression. People with SEID needed a term to better describe what’s going on in their bodies: systemic (affecting the whole body); exertion (associated with both mental and physical exertion); intolerance (specific impairment, like in gluten intolerance); disorder — a very real and very serious medical condition.
In the process of renaming the condition, the researchers also streamlined the diagnostic criteria. They made the definition clearer and easier to understand, and created a framework for doctors to use so they could arrive at a correct diagnosis without having to resort to exhaustive and potentially very expensive testing. This reduces the burden for patients — SEID makes even visits to the doctor’s office challenging, as they require exertion — and allows them to access treatment options more quickly. Unfortunately, there aren’t a large number of treatments available, but a correct diagnosis can help patients take steps like applying for disability, if necessary, as well as seeking accommodations as needed.
A clear diagnosis can be incredibly valuable for people who have felt frustrated by the sense that something is ‘wrong,’ but also shamed for not being able to toughen up and get it together. In what is perhaps a very basic example, a person with undiagnosed SEID might struggle with walking around, which might limit her level of engagement with the community, because leaving the house requires exertion that’s beyond her capabilities. She could address the issue with a scooter or powerchair, but she might feel shy about doing so — with a diagnosis, she’d have a better framework for understanding what’s going on, and more confidence in using a mobility aid so she doesn’t have to waste precious energy on activities like walking around. (This would be one among many reasons why you should never question someone who both walks and uses a wheelchair for mobility.)
It also, though, changes the perception of the condition. Shakespeare claimed that a rose by any other name would smell as sweet, but that’s actually not quite right: It’s a different rose. SEID and CFS/ME have slightly different diagnostic criteria, and they also have the possibility of being perceived and treated very differently on a social level. Renaming things matters. Renaming things has power. Renaming changes things. Patients who were formerly diagnosed with CFS/ME have the same symptoms as those with SEID, but they may find themselves encountering more social acceptance.
This is why we need to take naming responsibilities seriously. By defining such conditions accurately, we can better articulate their nature, and we can focus on eradicating shame and stigma as well. Yes, ‘exercise intolerance’ might sound laughable to some people, the same people who made fun of CFS/ME, but it also helps to explain what’s happening for laypeople who might be confused. CFS/ME might have been medically appropriate, but also somewhat confusing — after all, almost all of us have been fatigued at some point, so what does fatigue really mean? What does ‘chronic’ fatigue mean?
Conversely, we more clearly understand and respect a clearly outlined medical condition with a comprehensible name: We understand ‘intolerance’ in a medical setting. We comprehend how it functions and we have a framework for exploring it as a social concept. For patients with SEID, their treatment options might not change (at least initially), but perhaps this will shift social perceptions, and that may improve their quality of life — which is a treatment in itself.
Image: Bed (of) Flowers, Mish Sukharev, Flickr