By Shawn Kennedy, MA, RN, AJN interim editor-in-chief
The other day I saw a news report from Reuters noting that a study in the journal Science found that a retrovirus linked to prostate cancer may be implicated in chronic fatigue syndrome (CFS). The report explains that researchers “found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients (67%). The same virus showed up in only 8 of 218 healthy people (3%).” The hopeful take-away message is that IF this virus does have a role in the development of CFS (and that’s still to be proven—all that can be said now is that this study found it to be predominant in people with CFS in comparison to those without CFS), then researchers can develop medications to treat this disease.
But what I took away was a different message. I remember when CFS was considered one of those nebulous, often self-diagnosed syndromes that led health care providers to attach some skepticism to whatever a patient who claimed to have one of them might say. There have been other diseases or clinical problems that have been dismissed by clinicians only to be verified later—fibromyalgia, restless legs syndrome, and “chemo brain” (the cognitive difficulties that often occur after chemotherapy; though a complaint of patients since the 1970s, it has only recently been verified by research) come to mind. There’s also another one, Morgellon’s Disease, the existence of which is now being researched by the CDC.
We’ve finally accepted the premise that pain is what the patient says it is. Why shouldn’t that extend to other complaints? Why is the burden of proof on the sufferer?
As clinicians in an evidence-based environment, we look for physiologic changes that can be screened, measured, palpated, auscultated, and monitored—we want to see or verify symptoms for ourselves. If you practice long enough, you’ll have at least one story about “that” patient who no one listened to—the one who, regrettably, someone should have listened to. Do you have a story to share?