10 Essential Facts About Chronic Fatigue Syndrome

Chronic fatigue syndrome is often difficult to diagnose and has no clearly defined cause. Here’s what you need to know about the disorder.

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Picture of a drawing of a woman who is tired and fatigued
生活方式习惯和良好的支持系统可以帮助患有慢性疲劳综合症的人管理症状。 Darren Hopes/Getty Images

For years,慢性疲劳综合征(CFS)has baffled both experts and patients alike. Although up to 2.5 million Americans may live with the disorder, researchers are only now starting to better understand it — and to realize that we still have a lot to learn.

In fact, even the name itself might be inaccurate. A recent report commissioned by the Institute of Medicine (IOM) concluded that because the illness can cause much more than, say, drowsiness, a better name may be “systemic exertion intolerance disease” (SEID). Keep reading to find out 10 more need-to-know facts:

1. CFS is a very real disorder.A major problem with CFS is that people who have the condition sometimes feel like no one believes them. “They’re often told it’s all in their heads,” says Jacob Teitelbaum, MD, author ofFrom Fatigued to Fantastic和an expert who specializes in the treatment ofchronic fatigue and fibromyalgia. That’s also another reason behind the IOM’s proposed name change: According to the organization’s report, the term “CFS” can cause patients (along with their family and medical personnel) to “trivialize the seriousness of the condition and promote misunderstanding of the illness.”

“This name change acknowledges that this is a very real and very significant illness that can no longer be pushed aside,” says Dr. Teitelbaum.


2. Fatigue isn’t the only symptom of CFS.First things first: We’re not talking about a general feeling of sluggishness. We’re talking about a type of fatigue that gets worse after physical activity or mental exhaustion, and that isn’t alleviated with bed rest. And there are many other symptoms that accompany this exhaustion, including muscle pain, cognitive impairment, unrefreshing sleep orinsomnia,颈后不适,颈部或腋窝淋巴结肿大,频繁喉咙痛, headaches, and difficulty fighting infections.

3. CFS is often difficult for doctors to diagnose.There’s no lab test or biomarker for the disorder, nor are the severity, number, and type of symptoms the same from person to person. And because people receive a CFS diagnosis only after their doctors rule out other medical conditions — likeanemia, anunderactive thyroid,bob ios下载 ,或肾脏和肝脏问题 - 诊断过程可能需要很长时间。如果您的疲劳连续持续超过六个月,并且伴随着上面列出的几个症状,则可能有CFS。(您也可以阅读IOM的诊断标准online.)

4. Many people with CFS don’t know they have it.Because an estimated 84 to 91 percent of people with CFS haven’t been diagnosed yet, the IOM report says that the disorder’s actual prevalence may be much higher.

5. CFS的原因尚不清楚。Scientists are still trying to pinpoint what causes CFS. Right now, some experts think that multiple triggers may bring it on; infections, immune disorders, stress, trauma, and toxins have all been studied as possible culprits, although no single cause has been identified as being the most likely one.

6. Some people are more likely to have CFS than others.根据疾病控制与预防中心的说法,CFS为四倍more common in womenthan in men. Though the average age of onset is 33 (it’s more common in adults), CFS can affect people of all ages. “This disorder really affects all walks of life,” says Teitelbaum, who’s treated patients as young as 3 years old.

CFS can also be seen in members of the same family. (That seems to suggest there’s a genetic component to the illness, but more research needs to be done to confirm this connection.) Finally, troublemanaging stressmay also contribute to the development of CFS.

RELATED:应对慢性疲劳的4种自然方法

7. Many people living with CFS suffer from social isolation and depression.Chronic illnesses and depression often go hand-in-hand. It’s not uncommon for people with CFS to have to limit the amount of work they do, and the social activities they once enjoyed. Some are even temporarily bedridden. So it’s no surprise that that people with CFS often feel isolated and depressed.

Christine Stamatos, doctor of nursing practice, director of theFibromyalgiaWellness Center at North Shore LIJ Health Systems, says she often discusses mental health with her patients, many of whom live with both fibromyalgia and CFS. “I very much believe in connecting people with the proper resources to get counseling if that’s what they need,” she says.

8.像许多人一样invisible illnesses,” CFS often comes with a social stigma.许多人根本不理解障碍,so they may think that those living with it are “faking it,” or that the illness is not as bad as the person makes it seem. This can also contribute to feelings of isolation. Dr. Stamatos often reminds her patients to try to separate themselves from the illness. “It’s important to remember that the disorder doesn’t define you,” she says. “It’s not who you are.”

9.无法治愈CFS。Since researchers are still trying to understand the nature of CFS, no specific treatment has been found. But that doesn’t mean that there’s nothing you can do to alleviate your symptoms. Doctors should develop an individualized treatment plan for you which, ideally, will have a medical team that can include rehabilitation specialists, mental health professionals, and physical or exercise therapists.

10. Lifestyle changes can help.Though there is no cure for CFS, certain behavioral changes can also help alleviate your symptoms. Getting a good night’s sleep (ideally eight to nine hours per night) is key, as inadequate sleep can worsen symptoms. Eating a well-balanced diet and exercising (within your ability, of course) can also help prevent CFS symptoms.

Stamatos recommends a strategy called “pacing,” or scheduling activities in an appropriate manner. “A lot of people living with these chronic conditions find that the more they can plan their lives — which they may not have had to do before — the easier it is,” she says. “They can still manage to get things accomplished in a more measured way.”

Finally, don’t underestimate the power of a strong support system. “I always tell patients to be more willing to ask for help,” Stamatos says. “It doesn’t mean you can’t work or do the things you love to do. It just means doing them differently.”

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