Illness Beliefs (or Why I Am Not an ME/CFS Activist)

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.


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9 Responses to Illness Beliefs (or Why I Am Not an ME/CFS Activist)

  1. N.A.Wright says:

    “Blow[ing] up medical ideas of what ‘organic disease’ really means”, isn’t going to be achieved by repeating falsities about the PACE trial or invoking 100 year old treatments demonised in popular fiction. The failings of PACE are demonstrable but certainly do not include ‘forced exercise’, which frankly sounds like wing nut hysteria of the “UK socialized medicine is killing elderly patients because they are difficult” variety. Whether Lewis Yealland was a medical pioneer bringing genuine relief to battle fatigued patients or merely complicit in a military machine concerned only to cycle soldiers back into the trenches is question of social history which can tell us little about the reality of 21stC medicine.

    There’s not much basis to consider ‘signalling’ as revolutonary, it’s a concept so widely and profligately used that it now borders on degrading into mere seo tag, certainly it isn’t a portal to an alternate non empirical universe. Reeves et al of ten years ago failed not because it was empirical but precisely because it lacked the power to be empirical. Of course one can tie Reeves (now retired), Unger and other red button names to a ‘Sherrif of Nottingham’ notion of ‘gatekeepers’, but some evidence of current gatekeeping, rather than that of a bureaucracy retreating into bureaucratisation in the face of budget restrictions and political fractiousness, is needed if the role of scientific gatekeeper is to be considered seriously.

    It’s a huge irony that it was exactly the idea of “exploding the borders between medicine and psychiatry” that led to the creation of the biopsychosocial model that underwrites PACE and other work of the so called Wessely school. The boundaries between all medical specialisms are under constant realignment, not least in the realms of neurology and neurochemistry, of course there are always hold outs who wish to protect intellectual or financial positions, but it is wrong to characterise the whole of global medicine in terms of those hold outs. Likewise P2P isn’t the only game around, and indeed there is science that deserves to be celebrated, but it’s system science, not revolutionary, new, grandiose and fantastical, just solid work by people dedicated to following scientific principles. The Rutiximab work didn’t come from some new frontier, it came in good old serendipity – an observant clinician dealing with a different condition altogether, happened to tie effects of a long established drug to impacts on ME. That’s how most breakthroughs come about, and the point of real concern about the involvement of psychiatry is its capacity to have a chilling effect, stopping other specialisms from having an interest. That certainly does need to be challenged and there is a real danger that P2P may actually ossify a rather dead hand of a certain type of psychiatric thinking.

    • Jennie Spotila says:

      I don’t speak for Joe, but I think part of the problem with P2P is that it is looking at the problem the same old way because that’s how we’ve always looked at the problem. The systematic review certainly didn’t question any of the old paradigms, although in fairness, that is not what a systematic review is supposed to do.

      I think it is cognitive bias to say all these case definitions capture the same disease, albeit described differently, simply because they all include severe fatigue and all use the labels ME, CFS or ME/CFS. It’s a bit like saying we don’t need imaging or molecular techniques to think about breast cancer because some women with lumps in their breasts get really sick and die, and some don’t, but they all have breast cancer because they all have lumps.

      The glimmers of hope in ME/CFS research – rituximab, systems networking, CPET – were all excluded from the review. The danger is that the P2P Panel will swallow the review whole, rather than question everything and look for the ideas at the edges. The old way of doing things has failed us. I find it hard to believe P2P will find a new way forward, although I hope that it happens.

  2. Kati D says:

    Thank you so much Joe Landson for writing this commentary and Jennie Spotila for publishing it on her blog. This is definitely food for thoughts for health care social media.

  3. N.A.Wright says:

    @Jennie Spotila
    Following the brilliant forensic deconstruction that you and your co-authors have done on the P2P I don’t see how anyone can not acknowledge that it is a deeply flawed process. I would just urge caution not to attenuate the scalpel sharp precision of your P2P submission by veering into a dialogue that allows hyperbole and fantasticism. It’s both unnecessary and self defeating to exaggerate the deficiencies of psychological therapies targetted at ME/CFS, the failures and limitations of which are relatively easy to define. IMO it is equally lacking in usefulness to present a small grouping of researchers within a limited field of a single medical specialism, as having huge influence on medical science as a whole. One could argue that it is the very fact that those researchers lack representation across a broad medical consensus that makes the preponderance of their work in the selectivity of P2P, so inappropriate.

    The work of Sharpe, White (PACE) Wearden (Fine), Crawley and others does offer some evidence for CBT and GET being possibly helpful in ME/CFS as support interventions. One can argue about the details and about appropriateness for differing patient groups (mild, moderate etc) but that’s about it, one doesn’t need to say that a psychology focussed perspective is wrong or even (although it is in the case of PACE) that the work is statistically flawed – it is simply limited work with limited application. Crawley’s work with children and young people probably demands greater respect than the others, but strictly in relation to that younger age group as it might be pathologically differentiated from older patients (more plastic immune systems, faster recovery capacity etc).

    One point on which I do agree with Joe Landson is that trying to maintain ME/CFS as a category is problematic, although I don’t share his analysis of why it is so, nor that maintaining the category doesn’t have facility. The notion of a single disease entity is IMO no longer sustainable, however n ME/CFS is still sustainable as an illness category as a broadly definable symptomology of poorly or undefined causation that is present in a large patient population. IMO the failures or successes of criteria sets are not in themselves problematic because it is highly unlikely that any criteria set based on symptomology alone will differentiate between differing organic causation. On that basis P2P fails not because it conflates multiple criteria but because it doesn’t acknowledge a priori that amongst 1 million US patients, multiple differing disease processes could be involved across that patient population. This isn’t a matter of criteria, it’s a matter of logic – if cause is unknown and there are a million patients then more than one causative agent and consequently more than one disease process must be considered a possibility. And if more than one disease process is involved across the population, prevention and treatment must necessarily be multifaceted unless there is a very improbable confluence of disease processes.

    • Jim says:

      ” It’s both unnecessary and self defeating to exaggerate the deficiencies of psychological therapies targetted at ME/CFS, the failures and limitations of which are relatively easy to define.”

      It is no exaggeration to say the attitudes perpetuated by the psychobabblers’ fraudulent research has caused me (and many, many others!) actual and substantive harm. The patient forums extensively document the poor treatment we are subject to by the medical industry and society as a whole.

      I was forced to work well beyond my physical capacity in order to stave off homelessness. That has likely increased the severity of the illness, and I am now almost totally housebound. My Social Security file is full of remarks such as “exaggerating symptoms” and “seeking attention”. Numerous doctors have told me the illness doesn’t exist, that all I need is exercise and therapy.

      The failures and limitations of CBT and GET have been buried by the Wessely School, CDC, and NIH. In spite of all the studies showing biochemical abnormalities, NIH is *still* working to promote psychobabble with its P2P program and their entire approach.

      Fortunately there are actual researchers doing actual research in spite of the NIH refusal to fund them. They are finding actual answers while the psychobabblers keep babbling.

  4. Kathy D. says:

    Have you seen the study published by Jose Montoya’s team at Stanford School of Medicine, in Wednesday’s Radiology journal? It’s very important. It says that there are three types of brain abnormalities in people with CFS. It’s been in the San Francisco Chronicle,, CNN, and Stanford has a press release on this.

    • Jennie Spotila says:

      It’s a very small study (15 patients), so it really needs to be confirmed in a larger group. But it’s very exciting!

  5. kathy d. says:

    Yes. It’s a small study but promising at Stanford. One important requirement is a very high-tech MRI imaging machine. Most facilities do not have one.
    It confirms though a study done in Japan by researchers using high-tech equipment also; they also found brain abnormalities.
    Stanford, Montoya’s team, is looking for a larger group to study.
    But I think this is ammunition for us to push that the disease has a physical, organic cause and manifestations. And that the saying, “it’s all in their heads,” might turn out to actually be true, but based on science and the study of the brain.
    Did you have other positive news on studies?
    By the way, I had to re-sign in when I just commented, and did it yesterday. Will this system require this? It’s making me tired already!

    • Jennie Spotila says:

      I’ve always used the setting that commenters have to provide a name and email. I don’t think that’s changed. And I don’t see any setting that allows me to keep people logged in. Let me know if it continues to be a problem.

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