Chronic Fatigue Syndrome (CFS) is characterised by overwhelming fatigue, post-exertional malaise, cognitive symptoms, sleep disturbances, and a vague constellation of muscle and joint aches. It is a frustrating disease, for doctors, for patients, and for medical students.
When I have brought up the topic with other medical students, some otherwise bright students have laughed and claimed it isn’t really a disease. Having met patients with CFS, I am convinced their illness is real enough. NICE guidelines from 2007 indicate that the symptoms patients experience can be as debilitating as those of multiple sclerosis, rheumatoid arthritis, or congestive heart failure. There is nothing factitious about the level of disability some patients with CFS have to endure.
But what is it? Unsure mumblings about viruses and co-incidence with depression don’t really cut it. I would dearly like to be educated about it, but what can my lecturers tell me? Theories and mechanisms are slowly being tested and teased out, about low cortisol levels, and disordered body rhythms, but we are still just finding the corner pieces of the jigsaw.
The result of this curricular void is that students knowing nothing about CFS become doctors ignorant of it. This ignorance breeds frustration, at a lack of knowledge, a lack of diagnostic tests to run, and a lack of treatments to provide. Graded exercise therapy is often lauded, but trials only describe it as moderately effective, and it is not a panacea for all patients. Cognitive behavioural therapy can also help, insofar as patients with any chronic illness can benefit from it.
The result of frustrated doctors is frustrated patients. CFS is a diagnosis of exclusion, which makes for a very poor label. It is admitting that we don’t know what it is, only what it is not, leaving patients to wrestle with an unknown disease and an uncertain prognosis. The return of normal test results does not bring relief. The patient knows that something is not right, so why can’t the doctor find it?
And what about the doctor with the normal test results in their hand? There is nothing they can find with a name on it, yet the patient still complains of pains, and aches, and fatigue on top of everything. The extreme, but easily imaginable end of this spectrum is that doctors will see these patients as a nuisance, chronic malingerers that gobble up clinic time.
A 2012 review suggests the exact opposite approach is needed, that “the care of people with CFS encompasses the essence of being a clinician—listening, interpreting, explaining, guiding, and supporting people through their personal journey of illness.” The challenge of CFS is to be a good doctor without the modern comforts of test and treatments. As Margaret McCartney puts it in a recent student BMJ article, “just because we may have no pill to give a cure, or no easy operative solution, we can still offer human kindness to our patients, listening, empathy, and a commitment to care for them.”
For what its worth, I remain frustrated and fascinated by CFS. I’ve got more hope of understanding quantum mechanics, and I usually give up with that when they start putting cats into boxes. However, for the medical student, CFS poses the challenge of understanding disease as more than diagnosis, prognosis, and management. Where is Oliver Sacks when you need him?
I wish I had something more substantial to put in this post. Isn’t that frustrating?
Rhys Davies is a fifth year medical student at Imperial College London.