Heroes Not Zombies

A study published in Science last week reports finding a high incidence of XMRV in patients with chronic fatigue. XMRV stands for “xenotropic murine leukemia virus-related” virus and is a retrovirus which seems to have jumped species from mice to men.

Dr. Mikovits and researchers from the National Cancer Institute and the Cleveland Clinic reported in Science that 68 of 101 patients with chronic fatigue syndrome, or 67 percent, were infected with XMRV, compared with only 3.7 percent of 218 healthy control subjects. Further testing after the paper was written found the virus in nearly 98 percent of about 300 patients with the syndrome, Dr. Mikovits said.

This is interesting, but the way it’s been reported is disturbing. The authors are claiming that it may be the “sole” cause of “ME”. I think that’s highly unlikely because “ME”, or “CFS”, is a poorly understood syndrome which probably encompasses a number of different aetiologies and illnesses. On the back of that, they’re predicting a bright future for the treatment of the condition using antiviral drugs and developing vaccines. Woa! Too fast! You can just hear the drug companies rubbing their hands with glee! This constant portrayal of complex illness in simplistic terms results in products being matched to diagnoses, instead of individuals being understood and enabled to experience healthy, natural recovery. (as a side note, I think you can conceptualise such complex disorders as failures of the body’s normal healing processes. Something precipitated the ill state, and for whatever reasons, the patient has developed a chronic condition of low vitality, poor resilience and ill health).

The second disturbing aspect of this report is how both sufferers and medical professionals have jumped on this as a possible “legitimation” of the illness. As if finding evidence of a virus now makes the disorder “real”, or “not a mental disorder”, or even illusory. OK, if this connection is established and results in sufferers being listened to, and taken seriously, then I can see that as a benefit, but why can’t they be listened to and taken seriously even without finding a virus?

Oh how little we understand about the so-called “placebo response”. Here’s an interesting study to throw into the mix. Apparently, the actual symptoms experienced by “placebo responders” in clinical trials accurately mimic the drugs being tested. The likely ill-effects reported by those who took a placebo in a trial are likely to be just like the ill-effects experienced by those who took the active drug.
What does this mean?
Well, if it’s truly a double-blinded study, how does the volunteer know what side-effects are likely? Some commentators have dismissed this finding as down to expectations but how did the volunteers know what to expect? I think this phenomenon needs to be studied rather more closely. If the volunteers, through the process of informed consent, are being made aware of the type of drug being tested and/or the possible effects it might have, then maybe this phenomenon will manifest itself more strongly than it would in a group of volunteers who really didn’t have a clue what they were (possibly) taking. If this were the case, then the expectation explanation might hold water. But if it turned out not to be the case, then how do we explain it? Morphogenetic fields? Collective unconsciousness?
I do wish the incredible rich variety of responses of the human being to therapeutic interventions was not reduced to such simplistic notions of a “placebo” (by which the researcher means, “nothing”).
Life is more complex than that.

Was HPV vaccination responsible for the death of that little girl in England last week? We live in a society where simplistic and judgmental conclusions seem to be both valued and common. In response to that news story you’ll have read some people argue that the vaccine isn’t safe, and others argue that it had absolutely nothing to do with the girl’s death.
Is life so simple? Can we really be so certain in relation to cause and effect? I don’t think so.
I often say to patients that when you think about chronic illness, it’s rare to be able to ascertain a single cause. In the vast majority of cases it’s far better to think about the multiplicity of factors and influences which have challenged the person, and to think about the dynamic, continually changing ways a person responds to and copes with those challenges.
For example, it appears this girl had a tumour “heavily infiltrating” her heart and one lung. It’s highly likely that such a serious pathology would be life threatening. The presence of that disease meant she was considerably more vulnerable and more fragile than other girls in her class. So did the vaccination provoke her final, fatal incident? Sadly, the truth is, we’re not clever enough to be able to know. In fact, until we stop thinking of human beings as simple machines where this leads directly to that, we’ll never be clever enough to know. We don’t have the equipment to show the complex behaviour of the whole organism. So to say that the advocates of the vaccination could “breathe a sigh of relief” was not just insensitive, it was wrong.
The fact that 1.4 million doses of this vaccine have been administered without any deaths is reassuring to everyone except Natalie Morton’s parents.
Human beings are not reducible to numbers. In yesterday’s Guardian there was a sensitive exploration of the difference between making a Public Health announcement and making a decision about a member of your own family.
Is vaccination a biological challenge? Yes, it is. If it were no challenge there would be no provocation of the immune response. Can a biological challenge be fatal? Absolutely. An anaphylactic reaction to a bee sting in a previously fit and healthy person can be fatal. Much lesser challenges can be fatal in an already vulnerable, compromised individual. Rather than dismiss the role of HPV vaccination in this tragic case, wouldn’t we be better served by improving the screening procedures before mass vaccination? Shouldn’t we make a better attempt to assess the fitness of the individual to receive this challenge?
Maybe it’s not easy to find such answers, or to live with uncertainty, but outright dismissal of risk by simplistic explanations and population-based statistics, really don’t inspire confidence.