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Chronic Fatigue Syndrome – Maybe We Should Have Listened

October 12, 2009

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

by obo-bobolina/via Flickr (Creative Commons)

by obo-bobolina/via Flickr (Creative Commons)

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?

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3 comments

  1. As a fifteen year CFS patient, I have dealt with the skepticism of doctors. I am now writing a research paper on CHRONIC FATIGUE SYNDROME an unaddressed priority. Thank you for the article.

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  2. Catherine,
    Great points – I do like your comment re “a kind doctor with no ego”. Too often, I think, our egos as professionals get in the way – “we know better”. I’ve seen this in other things – how a dressing is done, how one might start an IV (if you ever have to start an IV on a patient who is or was an IV drug abuser, listen to them!), and the list goes on. Patients who live with their illnesses day after day know more than we ever can about what works for them.

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  3. Thank you for your comments about believing the patient. In my case, it was chronic Lyme Disease that was disbelieved. Despite the fact that I had a known tick bite, obvious bull-eye rash, a diagnosis by a dermatologist, a positive lab test, and a brief remission with 100 mg of doxycycline qd X 7 days, chronic Lyme was an unpopular diagnosis at that time, so I couldn’t possible have it. With no other explanation, the symptoms must be due to depression (at least they considered a real illness) or malingering. It took a kind doctor who had no ego to take care of to treat a condition his peers did not fully understand. Only the arthritis remains today. Nurses need stand up for our patients. We have to accept that although health care providers can observe signs and document test results, only the patient knows what the symptoms are, and they are valuable clues. Better to take a malingerer seriously occasionally (and aren’t they sick, too?) than to increase the suffering of the ill by doubting what they are experiencing.

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