On the last episode of TWiV, we talked about XMRV, a retrovirus that appears to infect some people. A couple of studies have found correlations between XMRV infection and diseases, including chronic fatigue syndrome (CFS) and prostate cancer. A couple of other studies have tried to reproduce those results, and failed. After the episode, we got a lot of comments on the TWiV blog and on alandove.com from CFS patients, some of them quite vehement (prostate cancer patients didn’t get nearly as riled up).
What really seemed to set people off was my statement that we don’t know what causes CFS – a position I considered pretty uncontroversial. I elaborated on the show, pointing out that there is evidence both for and against infectious, environmental, and psychiatric causes for this disease, and that it could very well be some combination of those. Apparently, using the word “psychiatric” in this context, even with all of those caveats, was tantamount to dropping a match into a can of gasoline.
I made a few attempts at clarification in the blog comments, but it soon became apparent that the CFS patients and I were arguing from entirely different premises, and could never agree. They’re ill – often debilitatingly so – and want clear answers and a cure immediately, if not sooner. I’m not ill (thankfully), and I think like a scientist. And that’s the real problem.
Science has two great strengths, and two great weaknesses. Its strengths are that it is excruciatingly thorough, and its conclusions are as close as humans are capable of getting to objective Truth. Those are also its weaknesses.
The price of thoroughness is time. Scientists do not leap to conclusions, we crawl to them. It takes us years to determine the simplest things: that DNA is the genetic material, that poliovirus causes acute flaccid paralysis, that sunspot numbers rise and fall in a predictable cycle. Even then, we swaddle our answers in layers of “mostly,” “sometimes,” and “probably.” Proteins and RNA can transmit some genetic information, poliovirus infection can be asymptomatic, and some sunspot cycles are longer than others.
People who are suffering don’t want probabilities and uncertanties. They want answers. When they hear one that sounds good, they’ll grab it and go before anyone can say “but…” Say that you found XMRV in 60% of CFS patients and only 4% of controls in one small study, and some patients will hear “XMRV causes CFS, case closed, now let’s start taking antivirals.” Try to remind them that the science isn’t anywhere near done, that in fact it’s barely started, and you’re now threatening their established view of the world.
The second feature of science is its unique claim to truth. Its conclusions are equally valid for Christians, Muslims, Jews, and atheists. They’re true even if every neuron in your brain denies them. A postmodernist can scream until he’s blue in the face that the Newtonian frame of reference is just one of many equally legitimate world views, and that non-Newtonian claims to reality have just as much validity. Nonetheless, if he steps off a tenth-floor balcony, he will accelerate downward at 9.8 meters per second per second (minus air resistance). It works every time.
Sometimes telling the truth, or even listing all of the things that might be true, is bad diplomacy. “Well, Honey, it could be the dress, or it could be that your hips actually are big.” The statement certainly presents two possible truths, but the listener isn’t likely to hear them dispassionately. Similarly, saying that CFS could have infectious, environmental, and/or psychiatric causes presents a list of possible truths. The current science has not ruled out any of those possibilities, which aren’t even mutually exclusive.
Unfortunately, the word “psychiatric” carries heavy freight. Our society stigmatizes mental illness, and the current treatments for most psychiatric conditions range from mediocre to nonexistent. Saying that a disease could be psychiatric is saying that it could be ostracizing and incurable. That’s not something a CFS patient wants to hear. Many of them probably stopped reading after the previous paragraph.
I can’t stop thinking like a scientist, and won’t stop speaking and writing like one. What I will try to stop doing is arguing data against people whose objections rest on emotion. You’re entitled to your beliefs. Just try not to step off any balconies.
As an ME patient let me first tell you that we love science. It’s what we want. If it is a psychiatric illness, that is great too. We could then begin to work towards a cure. All we want is to be treated no differently than as if we had any other disease.
You mention that prostate cancer patients “didn’t get nearly as riled up.” That’s quiet understandable, as there is plenty of money being put into researching the biology of that disease. Also, clearly some did get riled up. I don’t know what about, as I don’t have a great understanding of that disease.
Don’t imagine that patients are coming from a different premise. We generally are not. Being ill does not cut the brain off from thinking like a scientist. We are fully aware that further investigation of the association of XMRV and ME/CFS is just beginning, with lots of questions to answer. We know this may have nothing to do with the disease, but clearly it has to be investigated throughly. I’m not sure what you think ME/CFS patients view of the world is? Could you clarify, please.
There are certainly many different options to explore when looking for the ’cause’ of ME/CFS. It would be really great if they were all explored. Unfortunately, in places like the UK, research into the biology of the disease has been almost none existent. And the question, ‘what is causing ME/CFS?’, is claimed to have been answered. There is a small group who do claim the disease to be psychiatric. We agree with you entirely, that we do not know what the cause is. However, because of this assumption, research is being stifled. It is bad diplomacy to say this to a fellow researcher, but it is the truth.
All ME/CFS patients want is good robust science into the disease, and for all areas to be explored
Could you also expand on why you think patients object based on emotions, and not on the known biology of the science?
Just to clarify, there is no stereotypical ME/CFS patient.
Could I also ask one more question Alan, what is your opinion on MS?
I have ME/CFS, but now the CDC is saying I don’t have this disease because I have neurologic and muscular signs. What should I do?
Thank you again.
P.S.
I would totally agree that psychiatric diseases are not treated appropriately, that there is a great deal of prejudice and ignorance both in society and the medical profession. This needs to stop, and education should start in schools. Government’s too need to realise that money is needed if we are to understand these diseases.