“Doing Things With Illness” (response)

The authors present a straightforward project: they acknowledge that patients and doctors hold fundamentally different views of CFS/ME, and they study how the two parties are able to interact/communicate in a clinical setting.  They observe that doctors, who view CFS/ME as a mainly psychological problem, are able to couch their suggested treatments in materialistic (brain chemistry) terms in order to work with patients who view CFS/ME as a mainly physical problem.  It’s very interesting that “patient & physician can situate themselves on common ground by indulging in a materialist language of neurotransmitters and their receptors” (20) – that a “distinctively modern” view of the brain appears to successfully bridge the gap between the two philosophies, but this is where the authors’ analysis of a “micro political struggle” ends.  Is there a successful bridge when the patients still object to the proposed treatment?  What exactly is the power relationship between doctor and patient?  Why are there two fundamentally different philosophies to begin with?  How does the microcosm of the clinic relate to other political macrocosms?  (I won’t go into this last question because I’ve got way too many thoughts to organize on the topic.)

I was surprised that the authors did not mention early in the paper how CFS/ME disproportionately affects women.  Later, they acknowledged that 71% of their 114-patient study were women, but they immediately followed this observation with a disclaimer that their study sample might not reflect the actual CFS/ME population.  (I found two studies from 2004 and 2006 that report a higher incidence in women, although Banks & Prior obviously didn’t have access to them in 2001.)  The reason why I’m focusing on this women-men (segmentarity?) issue is that diseases/disorders that disproportionately affect women (such as CFS, fibromyalgia, and migraines, to name a few) have historically been discounted as hysteria.  Women were told “it’s all in your head” (or uterus!) – that they were imagining their pain.  This background sheds significant light on why the CFS/ME community would be inclined to vehemently reject any psychological explanations and treatments – especially CBT, especially when it’s presented as “cost effective.”

I’m surprised that the authors did not develop/analyze the unbalanced power issue beyond the following observation: “Patient accounts are only allowed to unfold in a sequence that is determined by the clinician.  In that sense power relations enter into the very structure of clinic talk, aside from any consideration of content.” (15)  Doctors wield power over their patients in far more ways than just control of conversation.  The fact that the authors transcribed any resistance or even outright argument by a patient against the physician’s framing of the issue demonstrates how strongly the patients feel about their physical view of CFS/ME and how offended they are by the “official” psychosocial framing.  Even the name (chronic FATIGUE syndrome) is wrong for them: “they [the patients] tend to treat the fatigue as a consequence of what they consider to be a more fundamental (but as yet, unknown) disorder, rather than as the core feature of their experience.”

The authors observe: “In the position of the JWG [which doctors hold], on the other hand, is that wider social and psychological factors are implicated in the very nature of CFS.” (17)  This is very interesting because it deviates from the traditionally Western view of medicine as very germ-theory, external-disease oriented.  It’s closer to the traditionally Eastern holistic view of medicine as the philosophy of mind+body (+surrounding social life).  Why are the doctors choosing to view CFS/ME as a psychosocial syndrome instead of a physical (possibly viral) disease?  The authors mention some empirical evidence but don’t go further than that.  I’m not one to dismiss empirical evidence (assuming it’s sound), which is why I doubt there’s really a medical conspiracy going on here, but the cynic in me wonders if the (masculine) medical establishment is inclined to apply a “feminine” theory to a typically feminine problem. 

The more interesting question is why do the patients strongly prefer a totally biomedical explanation of their condition?  The authors appear perplexed by this: “it would seem that sufferers regard mention of a psychiatric disorder as a ‘dismissal’ of their complaints.” (18)  I think it’s clear that the patients want to legitimize their disease – to be able to tell others (and themselves) it’s not just in their heads.  They also want to push the blame outside themselves to a viral invader, since fatigue is commonly viewed as a personal failure of self-motivation.  A psychological cause, compounded by a treatment like CBT, puts the responsibility squarely with the patient; they are told “you’ll get over this if you just try hard enough.”  Talk of brain chemistry somewhat mitigates this because it depersonalizes the cause and offers an external solution (medication).  But are patients really happy with this re-framing, or are they just settling for their only doctor-provided option?


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