Even though some people discredit the reality of suffering from it, chronic fatigue syndrome is a serious disease which needs a better name to suggest that. Also, it needs a more strategic approach to diagnosing the illness based on real symptoms, as it was declared by a government advisory association.
Years-worth of stories were presented at the esteemed Institute of Medicine by swarms of patients who were misdiagnosed or disregarded by cynical doctors. On Tuesday, a committee from the IOM got together and tried to put an end to this long-controversial dispute, and came up with five symptoms which would allow doctors to make an accurate diagnosis.
The panel also requested a new name for the illness, claiming that “chronic fatigue” is a name which belittles and minimizes the seriousness of the patient’s suffering. Their choice was Systemic Exertion Intolerance Disease, or SEID, to suggest that symptoms aggravate after exertion.
Dr. Ellen Wright Clayton, a specialist on genetics from the Vanderbilt University, said that it is unfair that people should wander around for years, from doctor to doctor, trying to get a diagnosis which would help them get better. Dr. Clayton was appointed head of the IOM committee and she urged doctors to improve their diagnosis techniques, as well as sympathetic manners. Physicians should not dismiss these patients by claiming that they are often chronically fatigued as well.
For those groups which didn’t wait for the official name change, they had already started calling it by a more complicated one: myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. In spite of the name problem, the main symptom of the disorder is a relentless and profound fatigue, and it often comes with memory issues and different other symptoms. Depending on how advanced it might be, even a simple task like buying groceries might drive a patient to bed for the rest of the day. The difficulty in diagnosing the problem comes from the lack of a proper medical test. Also, there is no specific medicine for treating it.
The largest advocacy group in the United States is Solve ME/CFS Initiative, and they believe this moment is defining for the disease, because a government-funded study would spike more research, improving diagnosis and trying to figure out how to treat it. But even if the new name will not catch on, the group thinks that naming it a disease instead of a syndrome is already progress. By calling a serious illness by a belittling and even insulting name is the main factor causing doctors, family members, friends or even employers to disregard it, and not give it the serious attention it deserves.
Because most of these cases are misdiagnosed or not diagnosed at all, the report estimates that somewhere between 836,000 and 2.5 million Americans are confronting with this illness. For example, the best-selling author Laura Hillenbrand, has suffered from undiagnosed ME/CFS for years. During her time spent working on her famous book “Unbroken: A World War II Story of Survival, Resilience, and Redemption”, the author said that it was impossible for her to get out of the house for two whole years, not a single time, due to extreme fatigue. This exhaustion was experienced even in the house, forcing her to drag herself to the computer or the phone for the interviews she had to do. Laura Hillenbrand has appeared on the CBS show “Face the Nation” in December 2014.
In 2013, IOM was asked by the Department of Health and Human Services to analyze the diagnosis of chronic fatigue. Many specialists were included in the panel appointed with the task, and the public has received the examination with hundreds of comments.
On more recent news, this Tuesday, the IOM committee pressed the HHS to come up with a useful kit which doctors could use to properly diagnose the disorder, by providing new criteria. The panel suggested that diagnosis should be based on three important symptoms: fatigue and significant reduction in activities that last for six months or more, post-exertion aggravation, and restless sleep, which leaves you unrefreshed in spite of being exhausted.
In addition to these three core criteria, the patient must exhibit at least one other symptom: either cognitive impairment, also known as “brain fog”, or orthostatic intolerance, which is described as improvement in physical condition if the patient is lying down, because an upright position cannot be sustained for long.
If doctors will start making accurate diagnosis, committee member Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City believes that treatment for some of the symptoms can be found. She said that this fresh start hopes to provide better diagnostic criteria for a better understanding of the disease.
Eventually, a doctor’s guide for diagnosing will be drafted, but until then, committee members are spreading the word in several journals, which point to the diagnostic criteria from the www.iom.edu website.
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