Originally published in HCPLive.com
What defines a “disease?” At what point does a collection of symptoms and causes make the transition from “condition” to disease? Is it when a consensus forms around a concrete, observable, and repeatable set of biochemical and/or physiological processes and outcomes? Surely there is little doubt that diabetes or hypertension qualify as a disease under the standard paradigm. But what of the quite large range of complex chronic conditions for which there is no known cause (almost all autoimmune inflammatory diseases, for example)? How do patients, the medical community, and society decide what gets to be called a disease, and how does that process inform the ways in which we treat the patients who have the disease?
On Monday, October 19, at the 2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms.
Russell basically took the position that fibromyalgia does not rise to the level of discrete, measurable, observable disease, instead preferring to view it as a social disorder that is determined by societal, historical, and other factors and contexts. “Is fibromyalgia the cause of suffering or a term used to describe it, equivalent to chronic somataform disorder?’” he asked. He spent much of his allotted time discussing the phenomenon of how the label we attach to a disease or condition, and how our perception of that disease, changes over time. This mutability of language and perception, and the need that patients and clinicians have to give a name to the cause of illness or distress, what Russell referred to as pathoplasticity, has led to a whole host of loose collections of commonly experienced symptoms to be elevated to the status of disease.
Russell returned several times to the concept of memes and the important ways that our social context leads us to identify, characterize, and communicate about the causes of sickness, pain, and anguish. This can build up a kind of critical mass in our collective conscious and lead to the phenomenon Russell called “diagnosis of the month.” He pointed to sick building syndrome and multiple chemical sensitivity syndrome as other examples of this. We will go to great lengths, he said, to try to explain and put a name to medically unexplained symptoms.
Leslie Crofford, MD, began by asking the audience, “If fibromyalgia is ‘disease,’ what is the role of rheumatologists in the diagnosis and management of patients with fibromyalgia?” Crofford said that a disease is any abnormal condition that impairs bodily function and is associated with specific symptoms or signs. She asked, “Do you need to have a cause to have a disease?” and pointed to several chronic diseases with no known cause (including the aforementioned autoimmune inflammatory diseases). Other questions to consider as part of this slippery process of naming a disease: When does a patient have a disease that needs to be acknowledged? Who decides and why?
Crofford said that she thinks the debate over “disease or not” boils down to whether professionals can recognize a common set of symptoms and signs, whether patients with these symptoms have anything in common (genetic factors, triggering factors, psychologic changes), and whether patients benefit from understanding the nature of the symptoms and display a predictable response to rational treatment.
She said that, whatever their flaws, the ACR criteria for fibromyalgia identify a discrete group of patients, and that patients meeting ACR criteria for fibromyalgia exist on a spectrum regarding symptom domains, heavily weighted to psychological distress, coping issues. She also identified three key categories of information to consider:
Etiology: Genetic vulnerability factors for fibromyalgia are likely shared with depression, anxiety, and chronic regional pain syndromes. Trigger for fibromyalgia , both physical and psychological, can be identified. The physiology of central pain and biochemical alterations in the cerebrospinal fluid have been identified.
Treatment: Developing a treatment plan requires that the patient have a conceptual framework of their condition (the first step of which is being able to put a name to the cause of their affliction). Most patients seem to do better with non-pharmacologic treatments in which they can participate (the self-actualizing patient). Patients treated with pharmacologic interventions tend to do better when treatments address central rather than peripheral targets
Approach to patient: Although there is some concern that labeling patients with a disease makes them worse, there is no evidence supporting this.
In closing, she said clinicians should remember that whatever their position is in the disease/not a disease debate, they need to be aware that their patients have symptoms that adversely affect their quality of life and/or function, and they deserve thoughtful consideration. While acknowledging the abilities of primary care physicians and other healthcare professionals to treat patients with fibromyalgia, Crofford said the rheumatologists are uniquely trained and qualified to evaluate these patients, provide the best information, and devise the most effective treatment plan that meets the unique needs of each individual patient.
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- Does fibromyalgia really exist?
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- Chronic disease management
- Diagnosis to chronic disease management
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- Chronic Lyme disease
{ 13 comments… read them below or add one }
I’d post more, but this chronic fatigue syndrome is killing me.
Pathoplasticity. I love that word. It seems like it should be reserved for the crazy plastic surgery population.
Stages of Growth of a Fibromyalgia Diagnostician:
Stage 1 (medical student): OMG, there is no such thing as FM. You’re all just a bunch of whiny losers without evidence of real disease who want to be on disability.
Stage 2 (Intern): Fine, “FM” is “real” but the treatment is to get off your fat butt and exercise daily. So don’t whine to me unless you’re doing that and don’t ask for disability because being active is the “treatment” and there’s no way you have more pain or less sleep than I do.
Stage 3 (Resident): Wow. I’ve seen three patients now with the exact same symptoms as fibro-foggers except they’re not whiny, drug-seeking or trying to get disability. They’re all high functioning, compliant, had their pain go away with exercise and return when stopping exercise and resolve again with exercise. They don’t even mention their fibro symptoms to me now in the primary care clinic unless I ask about it. Maybe this thing really is real. Better hit up Pubmed.
Stage 4 (Fellow): Sigh, why am I getting another fibro consult. It’s not rheumatic–it’s a disorder of central pain processing. It’s a freaking neurologic disorder mostly related to chronic untreated pain from other diseases or from sleep disorders. Either have the primary deal with it or just to piss off my (neuro) wife, consult neuro.
Stage 5 (Private Practice): Yes! Another quick fibro consult. I love the easy money.
That’s freekin’ funny stuff
It makes me sad to see professionals such as these listed disparage an illness and 6 to 10 million patients with Fibromyalgia. There’s nothing trivial, funny or inconclusive about it. There already is specific diagnostic criteria, just not a test… not yet, but maybe soon. I, personally and professionally, would love to see more compassionate reporting and actually what you as a doctor suggest to help Fibro people feel better and resume the lives that they want again so desperately. None of them want to be sick. I welcome your comments at the Health Matters Show. Thanks, Cinda Crawford, host of the Health Matters Show and former Fibromyalgia and Chronic Fatigue Syndrome patient.
I’m not sure we’d be much help to a “FMS/CFS Expert and Sacred Cellular Healing Health Practitioner” who “discovered and developed a proprietary brand of energy healing she calls Sacred Cellular Healing (SCH)” that “works for many illnesses” such as “Fibromyalgia, Chronic Fatigue Syndrome and autoimmune illnesses.”
Maybe you can educate us so I can stop wasting my time researching JAK-STAT pathways and treating autoimmune illnesses with TNF alpha inhibitors.
I believe the reason fibromyalgia has such a bad reputation and it’s been hard to convince some doctors it’s real is because for every 1 organic patient without psychiatric overtones you have 1000 with so much noise from the psychiatric overtones and snake oil salesmen you can’t weed out the signal.
Dear Nuclear Fire, I thought I keep reading on KevinMD that there’s no such thing as easy money for docs. Sorry, you’re not that funny and I agree with Cinda.
Nuclear Fire,
Your comments were very funny, there is always someone more sensitive than yourself to try to make you feel bad.
Fibromyalgia is a work in progress. As with any pain syndrome, we don’t yet have objective measures of pain, and so everyone (doctors, nurses, other patients) are always concerned that they are missing the ‘real problem (depression, anxiety, other sources of pain, malingering). It could be perceived as dishonest to just label something as ‘Fibromyalgia’ and prescribe drug x, instead of looking deeper into the issue.
I don’t know of any of us who have reached stage 5 who think of a fibro consult as “quick” or “easy.”
“Crofford said the rheumatologists are uniquely trained and qualified to evaluate these patients, provide the best information, and devise the most effective treatment plan that meets the unique needs of each individual patient.”
Most of the rheums in my neighborhood won’t take “fibro” consults.
@ Doctors’ Rheum: Compared to Shrinking Lung Syndrome; rapidly progressive diffuse systemic sclerosis; RA failed therapy to HCQ, SSZ, LEF, MTX, all TNF, and ritux; Class IV/V Lupus Nephritis; hemophagocytic lymphohistiocytosis; Rheumatic diseases presenting as paraneoplastic syndromes and of course the patient whose been worked up at two other academic centers by pan-specialists and is continuing to lose weight have ferritins in the thousands and constant fevers and leukocytosis without a diagnosis I do tend to think of fibro as quick and easy not to mention non-lethal and empowering for the patient. I’ve never found it takes anything more than some time and understanding combined with patient education. I do know quite a few rheumatologist who no longer accept consults for fibro, so maybe you’re right.
@ David: I agree. In fact, it used to be that I’d see patients getting worked up to the hilt when the diagnosis was pretty obvious. In contrast, now I’m seeing second opinions on fibro where they haven’t had what I’d considered basic evaluations for inflammatory conditions, age appropriate cancer screenings, etc. “Oh, you have pain everywhere, you must have fibro. Take this Lyrica and go away.” Me: Well, that calcium of 14 is a little concerning…
I still think of fibro as a diagnosis of exclusion.
At some point, the debate as to whether fibromyalgia is a disease or not is just that, a debate and a theoretical one at that. A patient has symptoms and is suffering regardless of whether they may have attempted to diagnose themselves. At that point, it is up to the physician to use all of the available diagnostic tools required in order to find out how best to alleviate the suffering of the patient. Whether or not that results in a diagnosis of fibromyalgia is only relevant in so far as it solves the problems for the patient.