When it comes to press coverage of CFS and XMRV, there is a pervasive mental illness meme that must be addressed. It goes something like this:
- XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness.
- Patients strongly object to characterization of ME/CFS as a mental illness. A small number of patients get nasty, make threats, or make it personal.
- This crazy behavior by a small number of patients proves the point that ME/CFS could be a mental illness.
- The strong resistance by ME/CFS patients to the mental illness explanation must come from society’s belief that mental illness is not “real” or “legitimate” illness.
- The small number of extremists are to blame for researchers, doctors, and journalists not wanting to touch the illness with a ten foot pole.
After the publication of the Lipkin study last week, there were several articles along these lines. The meme is particularly common in the British press, including articles in The Telegraph and The Daily Mail. Predictably, the comments on these articles follow the pattern of patients strongly objecting to the mental illness meme and offering physiological evidence that refutes it, and others claiming that the absence of biological evidence proves that patients are suffering from exaggerated lethargy or a desire to avoid reality. Things generally spin out of control from there. But I think getting caught in the meme’s whirlpool misses the point; let’s pick apart the meme’s logic.
XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness. Yes, it could. But it also might not be. The meme commentators base the entire premise on this great leap in their reasoning: A is not the cause so Z probably is. This is not logical. Eliminating one possible cause does not therefore mean that another (unrelated) possible cause is the best candidate. If someone presents at an emergency room with abdominal pain and testing rules out appendicitis, this does not mean that the pain is psychosomatic. There are at least a dozen other possible causes of the pain, and any competent doctor would proceed with testing to rule out those other possibilities. The same is true of ME/CFS: XMRV has been eliminated as the cause, but there are many more causal theories that must be pursued.
This first element of the mental illness meme is evidence of cognitive bias. The meme supporters’ bias is mental-illness-until-proven-otherwise. My bias is physiological-cause-until-proven-otherwise. I freely admit my bias but I have not, to date, seen the meme supporters own up to the bias in their own reasoning.
A small number of patients get nasty, make threats, or make it personal, and this proves that ME/CFS could be a mental illness. Unlike some of the commenters on the mental illness meme articles, I do not dispute that this is true. Threats, harassment, stalking, and violent behavior is illegal and inexcusable. It does not matter how angry you are, or how justified you believe your anger to be. This kind of illegal behavior is wrong and counterproductive. I would like to see ME/CFS patients disavow this behavior and stand up to it when it does occur.
However, this element of the meme is illogical and over simplistic. Does the criminal behavior of a few anti-abortionists mean that all anti-abortionists endorse violence for political ends? No. Does the fact that many lung cancer patients have a history of smoking mean that all lung cancer is the result of smoking? No. A small number of patients engaging in “crazy” behavior tells us nothing about the cause of ME/CFS. The fact that only a small number of patients do this means that the vast majority of patient do not. Shouldn’t this tell us that ME/CFS is not caused by mental illness, since the vast majority of us do not engage in “crazy” or illegal behavior?
Furthermore, the meme supporters make it sound like this behavior is unique to ME/CFS. But given the proliferation of crazy online, I question whether the ME/CFS patient population has more than the normal prevalence of this behavior. I’ve seen death threats made to researchers who are working on endangered sea turtles. In the last several months, I’ve seen online harassment and threats over football and editorial cartoons. Death threats to researchers or journalists are neither new nor confined to ME/CFS.
The strong resistance by ME/CFS patients to the possible psychological origins of their illness must come from society’s belief that mental illness is not “real” or “legitimate” illness. This is another fallacy. There are many reasons for our strong resistance to the theory that ME/CFS is a mental illness: 1) There is a great deal of research that supports a physiological cause or causes; 2) Our experiences are more similar to other disabling physical illnesses such as MS than to serious mental illness such as clinical depression; 3) Research has found evidence that distinguishes CFS patients from controls with mental illness such as depression and anxiety; 4) Many patients have been dismissed by family, co-workers, and healthcare professionals as being malingering, so we are understandably sensitized to dismissal cloaked in “mental illness” language; and 5) Insurance and disability companies offer different levels of benefits for mental versus physical disorders, so patients face real harm from characterization of their illness as mental, rather than physical. This element of the meme is actually quite devious. Not only does it ignore all the evidence against the mental illness theory, but it implies that patients themselves are prejudiced against mental illness and that is why they resist the label so strongly. According to the meme supporters, we are both mentally ill AND prejudiced against mental illness.
The small number of extremists are to blame for researchers, doctors, and journalists not wanting to touch the illness with a ten foot pole. I do not doubt that the extreme behavior has tainted the entire patient population and added to the “career destroyer” reputation of the illness. But I suspect that the repetition of the stories of threats and harassment have turned it into an urban legend far larger than the actual number of incidents. Furthermore, there is a much more significant reason why researchers do not want to work on this disease: funding. The historically anemic research funding makes this a self-fulfilling prophecy – few researchers apply for funding because they believe there is no funding, and then NIH explains the low levels of funding by pointing to the small number of applications. The early years of HIV were marked by unpopular patient populations (gays and IV drug users) and dramatic protests (occupation of public offices, vandalism of public buildings with red paint), but researchers still wanted to work on the disease. As funding increased, even more researchers became involved. If the social prejudice against gays and drug users or the ACT UP protests did not deter researchers from HIV, then I find it hard to believe that a few ME/CFS patients could be responsible for the failure of researchers, doctors and journalists to engage in this area.
Despite the protests of some of its authors that they have “deep sympathy” for people with this disease, the mental illness meme in coverage of CFS is over simplistic, misleading and illogical. The meme paints a portrait of this disease with such broad strokes that there is no likeness at all; it is more Jackson Pollock than Leonardo da Vinci. But patients who fall down the rabbit hole and try to counter this meme within its own universe do not further our cause. Let’s challenge the meme at its foundation: it’s illogical reasoning rooted in cognitive bias and broad generalizations.
Update September 30, 2012: Another article has appeared in the British press. I won’t link to it because it is an unfortunate combination of misinformation and hyperbole. The article quotes an unnamed researcher as saying, “it’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade.” It is true that patients are deeply offended by the kind of comments I discuss in this post, and it is quite possible that a very small number of individuals have made threats against a few doctors and researchers. See my comments on that above (executive summary: patients should stop it, and the rest of us should disavow that behavior). But it is patently ridiculous to suggest that the ME/CFS patient community is in any way similar to violent fundamentalists. As far as I am aware, ME/CFS patients have not rioted, burned flags, or killed an ambassador. The ME/CFS patient community does not have an armed wing. Such a melodramatic comment says more about the anonymous researcher and the journalist who chose to repeat this silly exaggeration than it does about ME/CFS patients.
Don’t fall for it, fellow patients! They are baiting us. They are saying stupid things to push our buttons and elicit the very responses that have been posted in comments on the articles and on Twitter. Stop delivering what they want to see on a silver platter. Don’t fight the battle on the ground they’ve chosen – let’s take the high ground. If we fight from there, we can’t lose.