A panel of medical experts in the US has officially classified chronic fatigue syndrome as a disease that needs to be dealt with seriously. And they’ve also renamed it to mark the upgrade - it's now called ‘systemic exertion intolerance disease’, or SEID for short.
It's pretty huge news for people affected by the mysterious illness, which has often been brushed off by clinicians as simply being “exhaustion” or a psychological, rather than physical, condition, as a result of its lack of set symptoms.
In certain countries, including the UK and Australia, the disease is also called myalgic encephalomyelitis, but this definition is quite specific and doesn’t accurately describe the condition for many sufferers.
“Because there is no specific test for SEID, many people who have it haven't been diagnosed, and healthcare professionals often have viewed patients as complainers whose symptoms are psychological, not physical,” writes Miriam E. Tucker over at NPR's Shot channel.
Despite the confusion over its classification, chronic fatigue, or SEID as it’s now known, has some pretty debilitating symptoms. It’s estimated to affect more than 180,000 Australians and up to 2.5 million Americans, and it can leave people housebound, unable to attend school or work.
And the new, 235-page report released on Tuesday by a 15-person panel from the US Institute of Medicine, has now locked down specific criteria that will allow doctors to diagnose who is affected by the disease. They also make the point of clarifying that the disease "is real".
"It is not appropriate to dismiss these patients by saying 'I am chronically fatigued, too.’” the authors write in the report.
The new definition of the disease is also much simpler than the current description, and focusses on these key symptoms:
- A substantial decrease in function as a result of fatigue that lasts at least six months;
- Exhaustion after minor physical or mental exertion, known as post-exertional malaise;
- Unrefreshing sleep;
- Cognitive impairment (or "brain fog") and/or the symptoms getting worse when the patient is standing up.
While those criteria may seem quite broad, they’re also easy and cheap for doctors to test for, and will make diagnosis far quicker. Currently it can take months or years for a physician to come up with a diagnosis of chronic fatigue, which, for someone who can't even pull themselves out of bed, is understandably frustrating.
Although there still isn’t one agreed upon way to treat SEID, the paper outlines research-backed ways to treat individual symptoms, and also encourages further research into the disease.
For now, this decision has only been made in the US, but it’s a very positive step forward for sufferers of the disease around the world, who are used to not having their disease taken seriously.
As Lucinda Bateman, one of the panel members, who runs a fatigue speciality clinic in Salt Lake City, told Tucker, they especially chose the term "disease" rather than "disorder" because "it's a stronger word."
It’s about time.