Panel Confirms Chronic Fatigue Is Real, Suggests New Name

A tired woman holds her noseChronic fatigue, a syndrome that causes chronic exhaustion, difficulty with everyday tasks, and worsening symptoms during times of physical exertion, has long been the subject of medical controversy. One recent study found that doctors tend to stereotype patients with chronic fatigue, and though 2.5 million Americans struggle with chronic fatigue, only a third of medical schools offer training about this syndrome.

This week, the Institute of Medicine, a nonprofit organization that offers research and suggestions for health care policy, confirmed that chronic fatigue is a real condition. The Institute also proposed changing chronic fatigue’s name to systemic exertion intolerance disorder.

Systemic Exertion Intolerance Disorder Confirmed as Real Disease

Chronic fatigue/systemic exertion disorder is a diagnosis of exclusion, which means there’s no single test that can tell people whether or not they have it. Consequently, more than two-thirds of people with chronic fatigue wait a year or longer to get a diagnosis, with 29% waiting five years or longer.

Attitudes toward people with chronic fatigue don’t help matters. Research suggests that doctors view people with the syndrome as socially deviant and lazy, with some doctors even believing symptoms are fake or the result of a mental health condition. The Institute of Medicine hopes to combat this approach with its pronouncement. A panel of experts agreed that chronic fatigue is real, and suggested that renaming the condition might encourage doctors to take it more seriously. Chronic fatigue, the reasoning goes, sounds like something everyone struggles with from time to time, while systemic exertion intolerance sounds more like a legitimate medical condition. 

Symptoms of Systemic Exertion Intolerance Disorder

People experiencing symptoms of chronic fatigue may have trouble getting a diagnosis since diagnostic criteria vary depending upon who’s doing the diagnosis. The Institute of Medicine issued new diagnostic criteria in an attempt to clarify matters. Under the new guidelines, a person qualifies for a diagnosis if they meet all three of the following criteria:

  • Difficulty engaging in per-illness activity levels for six months or longer.
  • Worsening of symptoms during physical or mental exertion.
  • Fatigue that sleep does not alleviate.

Additionally, people must have one of the following symptoms to qualify for a diagnosis:

  • Impaired thinking and cognition
  • Difficulty maintaining an upright posture, with symptoms improving when lying down

References:

  1. Raine, R., Carter, S., Sensky, T., & Black, N. (2004). General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: Qualitative study. BMJ, 328(7452), 1354-1357. doi:10.1136/bmj.38078.503819.EE
  2. Thompson, D. (2015, February 10). Rebranding chronic fatigue syndrome. Retrieved from http://www.cbsnews.com/news/rebranding-chronic-fatigue-syndrome/

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  • dixie

    dixie

    February 16th, 2015 at 12:02 PM

    this is another situation that while i think that it is real i am not certain that a name change will confirm that for others

  • D.b.D.

    D.b.D.

    February 26th, 2015 at 11:49 PM

    Doubters are going to doubt no matter what -in general- so really, and this goes for everything in life, one must be satisfied knowing that one is honest and rightfully claiming this diagnosis despite the doubts of others (which are going to exist no matter what we do so best to acknowledge them and just move on completely). Caring in a serious way what other people think when people in general kind of just suck and don’t have the integrity to a). believe that they don’t know everything, or that b). they are idiots for wasting their energy caring about what other people are doing rather than focusing on being there best selves etc., etc., etc….is just a waste of time and sets us all up for negative feelings. We all want the people around us to believe we are good and respect us, but the reality is when we walk away from them they are but a memory as we are to them if you want to get extra stencil is I’m sorry I just did, but honestly what’s really important is being able to go to sleep at night knowing that you are the best person you can be, and that’s truly all that matters. A little off-topic and in-depth but I truly believe this and while it sucks to be looked down upon for something that you are being honest about is not what’s important. people who make others feel bad by doubting what they say don’t sleep at night knowing they are the best person they can be so it all works out at the end of the day.

  • Esther Siebert

    Esther Siebert

    February 16th, 2015 at 9:10 PM

    While a new name alone will not convince doubters, what should is this first evidence-based report on SEID conducted by the prestigious Institute of Medicine’s committee of experts. This group, hired by the NIH, CDC, FDA and other government agencies, has put to rest the misconception that this illness is psychological. Its thorough investigation unanimously determined that this is a physical illness and needs much more research done to find the cause, treatments and a cure for this very serious, debilitating illness that has ruined more than a million lives over the last 30 years.

    A new name was chosen to overcome the disrespect, disbelief and even ridicule that SEID sufferers have lived with for so many years. It’s up to all of us to quash the misinformation widely abroad in the land where ever it appears and provide the truth about this devastating illness as an antidote.

  • Karen M

    Karen M

    February 17th, 2015 at 9:25 AM

    Unfortunately, the constant labeling and changing of diagnostic “new names” does nothing to help. The Canadian Post recently spoke of this dilemma in a story about the shrinking number of people choosing to go into the profession of psychiatry.

    For answers to help with all mental and physical concerns, an understanding of how our mind works is extremely helpful. Everyone can benefit from seeing how their thinking creates their reality from moment to moment.

  • Janelle

    Janelle

    February 17th, 2015 at 10:02 AM

    It’s not that you want everyone to experience this type of pain, but at the same time you have to think that if everyone could feel just a little of what these people go through then it may open up their minds a little so that they can understand that this pain and this illness is real. It is not something that they make up in their heads… it is something that they feel acutely, and while understanding will not make the pain go away, it is always nice to know that there is someone who believes in you and is on your side.

  • Esther S.

    Esther S.

    February 17th, 2015 at 4:29 PM

    No longer do we need to beg for understanding from people who question whether it is “all in our heads.” Now there is expert evidence from the government that this is a biological disease suffered by as many as 2.5 million people in this country with 80% of us currently undiagnosed. Let the shame and embarrassment that has kept many of us closeted for over 30 years disappear into the vapors of the past! The facts are in and we have been validated at last! Now is the time for each of us and our family and friends to get to work to fight for funding from the federal government health establishment that has ignored us for so long! After all, they sponsored this investigation and now they have their answer. Now they need to put their money where it is so desperately needed… This will only happen if we push for research, care, treatments and a cure. Please do your part to help. Thank you

  • elaine

    elaine

    February 18th, 2015 at 12:49 PM

    I am so happy that this is finally getting some much deserved recognition and attention. These are people who have been hurting for a long time and there has continued to be a lack of understanding or sympathy toward what they have felt. This could be the step forward that they desperately need.

  • Sloane

    Sloane

    February 21st, 2015 at 2:27 PM

    can you imagine having something wrong with you but not being able to get the correct diagnosis for years and years?

    It must be so frustrating trying to get to a physician who can correctly pinpoint what is and is not going on with you.

  • Johnny

    Johnny

    February 23rd, 2015 at 4:26 PM

    My wife had to hound doctors for years to finally get them to admit that there was something physically wrong with her that was causing her such pain and tiredness all the time. I think that they were afraid to make the diagnosis because there is such a lack of understanding even among the medical community.

  • D.b.D.

    D.b.D.

    February 26th, 2015 at 11:55 PM

    When I applied for disability which happened once I finally could not deny my situation any longer, my PCP whom I saw several times for fatigue refused to put the words “fatigue” in my chart because, I believe, he doubted that I had chronic fatigue, and did not support my application for disability. He continued to write that I had been there for anemia when I never tested positive for anemia. I went to him for fatigue and he suspected anemia but tests proved it was not that, and still he would not correct my chart and make it accurate which is pretty screwed up and is a great example of how we struggle with this diagnosis even with our own doctors who should know better. Thankfully he was not my primary doctor supporting my bid for disability and I managed to succeed despite hating that I had to do it especially at my age. You wouldn’t believe some of the other crazy and I fickle things regarding doctors and such that happened during my application for disability but that is for another time.

  • lizzie

    lizzie

    February 23rd, 2015 at 8:42 PM

    today I actually got in trouble with my supervisor for the aforementioned reasons. No matter how hard I try, the fatigue gets to me. It was very shameful and embarrassing. I feel very inadequate and frustrated given it is something I can not control. Dr. apt on friday… sigh

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