You've probably never heard of Systemic Exertion Intolerance Disease (SEID) before, but that's only because it's a new name for a debilitating disease that's been around for a long time but doesn't get a lot of attention (or funding).
You may have heard of it by its many other names, including Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Post-viral Fatigue Syndrome (PVFS), Low Natural Killer Syndrome, Atypical Poliomyelitis, Iceland Disease, Tapanui Flu, Royal Free Disease, Epidemic Neuromyasthenia, or even by its derogatory name, Yuppie Flu.
With so many names for the same medical condition already, why another new name now?
Well, after more than a year of extensive research, committee meetings, consultations with patients and experts, two public sessions and a comprehensive literature review, the prestigious U.S. Institute of Medicine issued a new, 330 page detailed report on ME/CFS on . The report highlights the need for more research, introduces new diagnostic criteria for ME/CFS and recommends a new name for ME/CFS.
Here's their explanation for the new name that I've extrapolated from various parts of their public release and presentation slides:
Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promotes misunderstanding of the illness. The committee agrees that this term does not serve ME/CFS patients well.
Furthermore, the committee concludes that the term “myalgic encephalomyelitis” is inappropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in ME/CFS patients, and myalgia (muscle pain) is not a core symptom of the disease.
To replace ME/CFS, the committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives. The committee believes systemic exertion intolerance disease appropriately captures the complexity and severity of the illness. Therefore, it recommends that patients who meet the proposed diagnostic criteria, whether or not they have already been diagnosed with ME/CFS, should henceforth be diagnosed with SEID.
The term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.
At twelve syllables, Systemic Exertion Intolerance Disease is a huge mouthful, especially when compared to only six syllables for Chronic Fatigue Syndrome. But I agree, it's a much better name. Moving from syndrome to disease will go far in reinforcing the severity of the illness in people's perceptions, especially for skeptics of CFS who seem to forget that the “s” in AIDS doesn't make it any less real.
And sure, fatigue is a major part of it, but I think exertion intolerance more accurately describes the condition and not just one symptom. Broken down, Chronic Fatigue Syndrome is like saying constant tiredness symptoms, whereas Systemic Exertion Intolerance Disease is like saying a whole-body encompassing (systemic) medical condition (disease) where you get sick/sicker just by doing stuff (exertion intolerance)…
But what stands out the most in their explanation is this part:
“This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.” Bingo! Not just physical exertion, any exertion.
The committee's report also emphasizes just how serious and debilitating the disease can be:
- The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.
- Many people with ME/CFS report difficulty completing everyday tasks and at least one-quarter have been home- or bed-bound at some point as a result of their illness. ME/CFS can severely impair patients’ ability to conduct their normal lives.
- Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.
- Between 836,000 and 2.5 million Americans suffer from ME/CFS and costs the U.S. economy $24-billion a year.
Much more than just debilitating fatigue, it really is a complex disease. Dealing with people's perceptions can be burdensome and even just explaining what it's like can be challenging and exhausting. And then, people with ME/CFS/SEID often suffer from other chronic illnesses as well, especially depression, which further adds to the complexity of not only diagnosing the illness, but treating it as well.
I realized that the only time I've ever explicitly written about having CFS and called it by name was back in :
[…] Never underestimate the value of friendship! Within a couple minutes, even though I was still feeling lethargic and super exhausted (just getting there was like running a marathon), you'd never know it from my mood. One of the worst things about having Chronic Fatigue Syndrome and being confined to the house all the time is that your “friends” pretty much abandon you and you feel very lonely all the time. I can't blame them though – it's not easy to want to be around someone who's sick all the time…
So it was a superb start to the evening – not only did it feel great to actually hang out with people again, but their warmth and energy was also a huge mood-booster. […]
Including loneliness in a list of how SEID impacts people's lives would undoubtedly only help to further trivialize the illness, but for me personally, dealing with the isolation has been a significant daily struggle. With everything else that's going on, being house-bound and effectively socially dead doesn't help.
At times, it's like I said, I can't blame people for not wanting to be around someone who's sick all the time. Most people's lives are full of ups and downs, successes and failures, good times and bad. But my life isn't just limited by illness, it's consumed by it. Most often, the only thing I've done all week, the only thing I have on my mind and the only thing I have to talk about is my health. So I have to choose between being fake, ignoring the obvious, pretending and lying just to have more pleasant conversation, or being honest, having integrity and bringing everyone down as a result. No one likes being around a Debbie Downer…
And at other times, it seems harsh that the people you thought were your close friends (or sadly, even family) turn their backs on you when you're down and need them most. Of course it's not fun or even easy to be around someone who's sick all the time, but it's never fun nor easy to be chronically ill either. When you think about the harsh reality of what life with SEID is like every day, non-stop, without escape, doesn't that make being there for someone for just a couple hours seem like a relatively small sacrifice in comparison?
You could argue that it's also a blessing in disguise since it helps to identify who your real friends are, separates the good from the bad and goes a long way in revealing people's true character. But at the end of the day when you're all alone and nobody's left, it's a sad, depressing truth to realize that you don't have any real friends… I'll take having fake, shallow friends any day, over having no friends!
But to be fair, having friends is also a two-sided thing. Having a good friend is the result of being a good friend. Which actually, is part of the problem. Friends require physical as well as emotional energy, time and consistency. Or in other words, friends require exertion…
I fear that including my thoughts on the value of friendship and on social isolation as a byproduct of SEID might trivialize the seriousness of this condition in some people's minds, but that's not my intention. Let me be clear: the social effects of having this disease are a walk in the park and comparatively insignificant to everything else I have to deal with on a daily basis. Easily. And there isn't much I can do to change my reality: there is presently no cure for SEID, very low recovery rates, few treatment options (and only with limited effectiveness) and no intervention has proven effective in restoring the ability to work.
Being a good friend to someone with SEID is comparatively effortless, costs nothing and goes a very long way in temporarily easing the suffering. Even if you can't take away the illness, at least you can reduce the social isolation, if nothing else. Viewing the presentation and reading the information on the U.S. Institute of Medicine's Website would be a good place to start. That's what friends do.