DM Blog

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. It 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 maybe even by its derogatory name, Yuppie Flu.

With so many names for the same medical condition already, why a 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 US Institute of Medicine issued a new 330-page detailed report on ME/CFS on February 10, 2015. The report highlights the need for more research, introduces new diagnostic criteria 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.

I’ve always avoided using the term “myalgic encephalomyelitis” as a synonym for Chronic Fatigue Syndrome for the very reasons they describe — that nomenclature describes a completely different disease. What resonated the most for me was this part (emphasis added):

…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, but any exertion.

Extreme fatigue is undeniably a major part, but I think exertion intolerance more accurately describes the disease as a whole 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)”.

At twelve syllables, “Systemic Exertion Intolerance Disease” is a mouthful, especially when compared to only six syllables for “Chronic Fatigue Syndrome”, but I agree, it’s a much better name. Also, 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 forget that just like the “S” in AIDS, calling it a syndrome doesn’t make it any less real.

A Serious, Debilitating Disease

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 US economy $24-billion a year.

Addressing people’s perceptions can be burdensome and even just explaining the breadth of symptoms that accompany this medical condition can be challenging and exhausting. Much more than only debilitating fatigue, it really is a complex disease. On top of that, people with this illness often suffer from other chronic illnesses concurrently, especially depression, which further adds to the complexity of not only diagnosing it, but treating it as well.

There is presently no cure for SEID, very low recovery rates, few treatment options (with only limited effectiveness), and no intervention has proven effective in restoring the ability to work. To learn more about Systemic Exertion Intolerance Disease, view the information on the US Institute of Medicine’s website.

On a Personal Note

The only time I’ve explicitly written about having CFS and called it by name was back in May 2013:

[…] Never underestimate the value of friendship! Within a couple of 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. […]

I hesitate to include loneliness in a list of how this disease can impact people’s lives or to write about social isolation and the value of friendship because I don’t want to diminish the seriousness of this illness in anyone’s mind. So 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 cope with on a daily basis. Easily. However, I would be remiss to not mention that dealing with this newfound isolation has been a significant daily struggle for me personally. With everything that’s going on with my health, being housebound and effectively socially dead definitely 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. Very 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. But no one likes to be around a Debbie Downer, so I’m constantly forced to choose between ignoring the obvious and “being fake” while pretending and lying, just to have a more pleasant conversation, or, having integrity, being honest and bringing everyone down as a result.

At other times, it seems harsh that when you’re down and need them the most, the people you thought were your closest friends turn their backs on you. Of course it’s not fun to be around someone who’s sick all the time, but it’s never fun to be chronically ill either. If you think about the agonizing 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 of hours seem like a relatively small sacrifice in comparison? Even though you can’t take away their illness, at least you can reduce their isolation.

To be fair though, having friends is a two-sided arrangement: having a good friend is the result of being a good friend, so therein lies the problem. Friends require time, physical energy, emotional energy, and consistency. Or in other words, friendship requires exertion…