Today, Joe Landson shares his thoughts on how the false illness beliefs (or even cognitive bias) among scientists is holding our field back. Joe says it is time to tear down the walls and think horizontally – to the horizon, even. Let’s look at what is actually in front of us, and not what we expect to see.
I am not an ME/CFS activist because of incorrect illness beliefs. Yes, incorrect illness beliefs – as I see it, they’re the main challenge in ME/CFS. No, no, not our beliefs as patients – the Wessely School’s notions that our beliefs make us sick are absurd, and always were. No, I mean incorrect medical ideas generally, specifically ideas of what makes an illness ‘real’ or not, or what makes an illness at all.
Let me explain. No, there is too much, let me sum up. For a very long time, doctors and researchers defined an illness as ‘organic’ by the tissue damage they could see. For example, the tumors they could see, feel and biopsy made cancer ‘real’. It was damage to an organ; hence, organic.
However this approach has had some treatment limitations. Cut the tumor out; more grow back. Eventually, medicos devised treatments to shrink the tumors and make them less likely to return: namely, chemotherapy and radiation.
For decades, treatment of cancer and other organic diseases generally improved. However treatment of those other diseases, those without detectable organic damage and called functional disorders, was decidedly mixed. It’s fair to say that treatment philosophies for those invisible functional disorders often (though not always) featured extraordinary contempt for the illness and the patient. From Dr. Lewis Yealland’s electrocution of World War One shell-shock patients to the Wessely School’s use of forced exercise for ME/CFS, it seems that contempt generally wins. Contempt is quick and seems to produce clear results… much the same way that cutting out the tumor seemed to ‘cure’ the cancer. Except it didn’t, and still doesn’t.
Meanwhile cancer treatment has evolved. As I write this, the Food and Drug Administration (FDA) is fast tracking radical new immunotherapy for cancer. Immunotherapy doesn’t affect the organic damage directly; rather, it blocks, damps or corrects the immune signals that encourage the tumors or other organic damage to occur. It’s about the signals – the signals that tell the organic damage to start or stop.
This begs the question: What about immune signals that don’t produce organic damage? What about illnesses with a chronic pattern of bad immune signals, but no apparent organic damage at all? What if the signal pattern is the damage?
This mental leap surmounts the wall medicos have built between organic diseases and functional disorders. Both types of illness can potentially be treated the same way – perhaps even with the same drugs, if the Rituximab studies are any indication. Moreover, doctors now can sometimes detect and treat disease before the organic damage ever happens.
This shift in medical beliefs is going on all around us, but not for us, because most of the official gatekeepers of ME/CFS are working so very hard to keep this illness category locked in place, endlessly describing empirical symptoms instead of genuinely investigating their underlying mechanisms. In the constant balancing act in life between control and progress, they side with control. Rather than waste time arguing with these gatekeepers, I’d like to do an end run around them, and point out that all these invisible functional disorders are ‘organic’, if we only change our minds and amend what we mean by ‘organic’. Organic can be a pattern of immune signals rather than the organ damage of yesteryear. Similarly I think our well-meaning friends who insist our bad signals must be located in our brains – organ damage all over again – are thinking too narrowly. Certainly our brains are deeply affected, but that doesn’t mean the bad signals start or end there.
When I grow up, I want to be a bomb-throwing medical anarchist. For NSA-types scanning this blog, no, I don’t mean actual bombs. I want to blow up medical ideas of what ‘organic disease’ really means. I want to explode the borders of medicine – the borders between organic disease and functional disorders; the borders between medicine and psychiatry generally. But just to keep you nervous, internet police, I can and will say that in Arabic if I have to!
This is a long way of explaining why I’m not an ME/CFS activist, per se. I think trying to maintain ME/CFS as a category is a narrow goal and a rigged game – rigged because our government seems dedicated to ‘evidence-based’ approaches to ME/CFS, rather than re-imagining the evidence we have. I think arguing over this or that definition of ME, or CFS, is a poor use of our time and energy, because none of the definitions extant define the immune signals that I suspect (but can’t prove yet) make us sick. To me, all the tiny, empirical functional categories, from bipolar disorder to Morgellon’s, are empty shells of outdated thinking. In pure immune research, someone is finding those signals as we speak – it’s just not labeled ME/CFS research, or Morgellon’s or bipolar research. At least, not yet.
We should seek this research out, celebrate and promote it. We should do as some are already doing, and point out both the sorry current state of – and the immense future possibilities for – almost all the invisible illnesses. Most of all we should see and portray the invisible illnesses as part of a continuum of immune signaling disorders, beyond their separate, and inherently unequal, empirical definitions.