(Note: The following is an excerpt from my longer post, “Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All),” written soon after the release of the recent IOM report. That said, I felt the analogy/explanation below deserved to be in its own post, separate from the SEID/IOM debate, so that people interested in more general ME and CFS topics can easily access it. If you are interested in my interpretation of the IOM report and how it will affect us, feel free to click the article’s name at the start of this paragraph. Otherwise, enjoy the post, and please feel free to share with as many people as possible! Thank you!)
When CFS was initially created in 1988, it was done “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” This is a direct quote from the release paper as archived on Pubmed. The fact that CFS was never intended to be viewed as a distinct disease of its own has been lost on most of the individuals diagnosed with it today. Patients (and many doctors) have taken a definition designed to create a category for researching unexplained fatigue and turned it into its own disease, demanding funds to research a cure and completely ignoring the fact that the group of patients diagnosed with CFS do not have a single disease entity, but a mashup of every fatigue producing illness under the sun. The following is an analogy that I hope will clarify the situation we are in and inspire both those diagnosed with ME and those living with a diagnosis of CFS to fight together for appropriate change.
When I first became ill, one of my symptoms was a constant, low grade fever. Because my doctors weren’t sure what was causing it, they wrote in my file that I had a “fever of unknown origin.” This wording is very similar to that found in the official description of CFS where it says it is for people with “chronic fatigue of undetermined cause.” Imagine if, instead of continuing to seek the true cause of my fever, my doctors and I had settled for the label of “fever of unknown origin.” Imagine that this became the norm any time anybody visited their doctor with a fever. Soon, insurance companies begin to realize the money they can save on expensive tests by convincing doctors and patients to not bother searching for the cause of each person’s fever. At the same time, doctors realize they can save valuable time and thus see more patients if they simply label everybody with an abnormally high temperature as having “fever of unknown origin.” Pretty soon, people with this diagnosis begin talking to each other. They’re ill, and because they all have a fever, some of their symptoms (such as chills and muscle aching) are almost universal among this patient group. They begin talking as though they all have the same condition. Several decades go by, and now nearly everybody – some doctors included – are treating “fever of unknown origin” as its own distinct disease.
But there’s a problem. Just before it became commonplace to immediately diagnose anyone with a fever as having “fever of unknown origin,” an outbreak of Polio hit the US. Initially, some of the doctors and researchers who knew better insisted that what a portion of these people had was Polio, but over time more and more Polio patients were simply labeled with “fever of unknown origin” and sent on their way. Because of the (correct) protestations and education attempts of Polio experts, many people began to associate the term “fever of unknown origin” with Polio. Now, decades later, the two are nearly always thrown together, and Polio as a distinct disease has been all but forgotten. Patients who come down with Polio are almost never diagnosed with it. Instead, they’re thrown together with everybody else who has a fever of any type, both in research and in day to day conversations and media articles. Because the two terms are frequently heard together, many people insist they are the same thing. Patients diagnosed with “fever of unknown origin” often prefer to say they have Polio, simply because the name sounds better and they believe them to be the same condition. Some people get very ill and die for lack of treatment, but because the majority of people diagnosed with “fever of unknown origin” don’t die of their condition, the ones that do tend to be seen as unfortunate, infrequent cases (though their stories are often used to raise funds to research “fever of unknown origin” patients – despite the fact that results are highly inconsistent due to having too many patient groups thrown together).
One day, the government decides to spend a million dollars to convene a panel to reassess “fever of unknown origin / Polio” and decide if a new name and criteria are needed. This panel considers using the name Polio, but because there is no evidence of classic, old fashioned Polio in the vast majority of “fever of unknown origin” patients, they reject the name as being unscientific. Instead, they decide to rename this diagnosis to “Pyrexic Disease.” Patients are thrilled. They feel the new name lends a sense of legitimacy to their (very real) suffering. Also, the continued lumping together of everybody with a fever saves insurance companies money. It also saves time in busy doctors’ schedules, while simplifying their jobs overall and keeping patients happier. Nobody gets accurately diagnosed with any of the true causes of fever anymore, but nobody seems to care. And Polio has all but disappeared as a distinct diagnosis.
It’s hard to imagine this happening, isn’t it? But this is exactly what has happened and is happening with Myalgic Encephalomyelitis (represented by Polio in this story) and Chronic Fatige Syndrome (represented by “fever of unknown origin”). The government is now attempting to rename so-called ME/CFS as Systemic Exertion Intolerance Disease (“Pyrexic Disease” above). And many people are happy with this. But ME isn’t CFS any more than Polio is equivalent to a fever of unknown origin. ME is a distinct neurological disease, with fairly well understood underlying pathology. It can be diagnosed with a high degree of accuracy using a specific series of medical tests. And it has a long standing history of its own, starting long before the fatigue category CFS was created. CFS, by definition, has always been a diagnosis of exclusion, a placeholder category for patients with “chronic fatige of undetermined cause.”
By treating CFS as its own distinct illness, the powers that be keep people from getting an accurate picture of what’s happening in their bodies through correct diagnosis. By settling for CFS as a final answer, patients are unable to benefit from the research and treatments available for their own, specific condition (conditions frequently misdiagnosed as CFS include Multiple Sclerosis, Lyme Disease, certain types of cancer, Major Depression, and more – most of which are clearly diagnosable with appropriate tests and have their own specific research and treatments available). By combining the category of CFS with the neurological disease ME, we risk burying a very serious disease underneath a larger majority of patients who do not have the condition. Not only does this cause unnecessary, severe suffering, it also kills. People on both sides of this issue are dying – those with ME who fail to get the early diagnosis and treatment so essential to give them their best chance at a decent life, and also those MISdiagnosed with CFS, some of whom have potentially deadly conditions of their own.
So before you jump on the bandwagon and decide that this is just a silly name war, consider the implications. Consider the fact that it is in everyone’s best interests for each person to get properly diagnosed. And consider the fact that the only way this can happen is to get rid of the falsely used category diagnosis of Chronic Fatigue Syndrome / SEID, consistently recognize and correctly diagnose Myalgic Encephalomyelitis as the distinct neurological illness it is (characterized by Central Nervous System dysfunction and a unique, testable type of muscle response to exertion), and ensure that those who don’t have the disease ME get properly diagnosed with whatever is going on in their bodies.
One last note: You may think this has nothing to do with you. You may be living a fairly healthy life. But consider the last time you felt fatigued in any way (whether it was generalized physical, cellular, mental, emotional, or some other form of fatigue). Consider the chances that at some point you will feel that way again. There’s a good chance if things continue down the path they are now your illness, whatever it may be, will not be properly diagnosed. Instead, you will be given a diagnosis of CFS/SEID and thrown in together with millions of people who don’t even have the same condition. This does apply to you. It applies to us all. Please help us spread the truth. Thank you.