Friends. Welcome to my ZedTalk(TM). Today I want to speak about “effort preference,” because that is the termite-infested foundation on which the Paper-Which-Shall-Not-Be-Named is constructed. Effort preference in this paper is defined as “how much effort a person
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subjectively wants to exert.” The authors warn us that, “as fatigue develops, failure can occur because of...an unfavorable preference.”
But how do they measure this remarkable concept, so key to their ground-breaking analysis? They use the Effort-Expenditure for Rewards Task
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(EEfRT), an instrument designed to explore effort-based decision making in people suffering from Major Depressive Disorder (MDD), anhedonic subtype (Treadway et al 2009). The anhedonic subtype of MDD is characterised by “aberrant motivation and reward responsivity”--ie,
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a lack of “willingness to expend effort for rewards” due to “decreased motivation for and sensitivity to rewarding experiences.” Anhedonia is used to distinguish MDD from other psychiatric disorders.
But wait! Surely ME isn’t...MDD? No indeed. In fact, the authors of The Paper
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carefully (rigorously!) screened out participants who had additional diagnoses that could confuse the results of the study.
This is not unlike taking an instrument designed to measure Fear of Swimming--as a subset of Fear of Water--and asking people who’ve been pre-screened
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and found *not* to suffer from Fear of Water to complete it...then using the results to claim they suffer from Fear of Swimming whilst also deliberately ignoring the fact that these people are all wearing casts bc they have broken limbs, so their behavior during the exercise
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will reflect the fact that they cannot currently swim.
It is patently, flagrantly absurd.
To be very clear, the authors selected people to study who are very sick and then deliberately applied an inappropriate tool that assumes *low motivation* and *lack of appreciation of
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rewards* leads to less effort. Results of the activity are interpreted accordingly. (Amusing in context of ME, where ppl are more likely to behave like the Black Knight--continuing to push thru even as their life blood drains away--than a couch potato.) 8/
Anyway, the whole paper is constructed around this, and it’s actually totally irrelevant to ME.
The authors even run regressions on the EEfRT results and attempt to correlate all the biophysical findings with this very particular key trait of MDD, piling a
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statistical disaster on top of the dumpsterfire they made of research design.
The way they discuss the findings also tacitly implies some causality (suggesting that effort preference for non-effort leads to deconditioning over time leads to, you guessed it, disability),
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although they are careful to say they can’t make causal claims.
As anything other than a joke or a teaching tool (perfect for undergrad methods classes!), this paper is an outrage. 11/
'But Z, what about the results of the NIH paper distinct from the whole effort preference thing?'
Fair. At times the article absolutely reads like (at least) two different people wrote parts of it, fundamentally disagreed, and mushed their work together anyway. And yes,
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I actually found a few of the biological measurements quite interesting, but I don't want to comment on any of those specifically bc I haven't done my due diligence on that (and do not have the capacity do to so).
The thing is, tho, this is not a low-impact conference
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presentation on some exciting preliminary data and analysis. This is the final product we're looking at--a whole paper published in a high visibility journal. And even for a journal culture that encourages ever-greater rhetorical grandiosity, some of the claims made about
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I could talk about how absurd it is for the NIH paper and press release to focus on “feelings of fatigue” rather than objective measures of PEM.
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I could talk about how “effort preference” is in many ways a rebranding of the old “dysfunctional illness beliefs” myth used to justify the egregious neglect and outright abuse of ME patients for decades.
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I could talk about the field day that government and private insurers will have with the declaration “these findings suggest that effort preference...is the defining motor behavior of this illness.”
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ME/CFS is a ~chronic illness~, meaning it lasts a long time--often for the rest of a person’s life.
It is a ~multisystemic illness~, which means it affects the entire body as opposed to just one part or one system of the body.
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It is a ~spectrum illness~ which means it can manifest along a range from mild to very severe. (Think of the last time your whole family came down with a virus. Some of you got sicker than others, right? ME is like that.)
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It's also a ~variable illness~. This means that one day someone w ME might experience moderate symptoms, while the next day they experience severe symptoms. It also means that a patient might experience one symptom (such as pain) as mild and another (such as fatigue) as
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I want to say this "out loud": severe and very severe ME will kill you a lot faster if you don't have money and/or someone to look after you and look out for you. A lot of us don't have this. If we decline, our deaths will not be well-considered, well-documented
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and widely mourned. They will be excruciating. Quite possibly messy. Heart-wrenchingly solitary.
There is no substitute for money and caregivers. Without them, we perish.
Similarly there is no substitute for not having to outrun violence or bombs.
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There were people in Palestine with severe ME, and in Sudan and the DRC. And many are dead now, because only the "lucky" become refugees.
I long for the more fortunate among us to at least *mention* our silenced, forgotten fellow travelers and what they may be going through.
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