I’ve now been able to read the new iCPET paper a few times (I’m slow). As you know, I do love a CPET paper. My first thought is: good that a second group is using this methodology for replication purposes. Adds credibility to the findings if more than one group are finding them.
My second thought is: they didn’t seem to have any requirement for max tests. They mentioned respiratory quotient for their healthy controls, but not for their patients. Why is this important? The potential to compare apples with oranges: results of maximal and submaximal tests.
How do I know? The 25th percentile for RQ was below 1.15. This suggests a lot of variability around the median and potentially values below the generally accepted cut offs for achieving a maximal test. True that they observed the same spread in their healthy controls, but with a
low sample size, it could be enough participants to influence the results. Why does it matter? Well, cells will extract only enough oxygen necessary to function if one group is working harder than the other group on the test, it’s going to look like more oxygen is returning to
the heart then we might expect, giving the appearance of impaired peripheral oxygen extraction when it’s actually the case the participants did not exert at a similar psychological level with respect to their different levels of capacity.
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Today’s unpopular opinion is evidence based practice isn’t just following a cookbook established by scientific research or the lack of it but it also involves a meaningful synthesis of lived experience and clinical judgement as co-equal sources of evidence. Three legs of a stool.
This means that, to practice in an evidence-based manner, we are *obligated* to meaningfully elicit the patient’s perspectives on what’s happening to them and why, including information they obtained from Internet searches, AI ramblings, social media, and patient support groups.
And not only are we obligated to meaningfully elicit that information, we are similarly obligated to substantively respond to and integrate those perspectives into decisions made about a plan of care. You see, there is some really good and helpful stuff floating around out there
We still know precious little about PEM, but one thing's for certain--it represents an impaired recovery response to exertion. How do we know this? We had data from systems to molecules, replicated across myalgic encephalomyelitis cohorts originating regardless of patho-etiology.
Who cares? Because a foundational aspect of being human is being able to count on physiological adaptations to exerting ourselves. Walk a little more so you can walk a little more. Read a little more so you can read a little more. Do some more to do more later. It's fundamental.
One way to think about this that has been described is the 'energy envelope.' (The terminology imprecision makes me a little crazy as a physio and exercise scientist, but it's popular and we'll go with it.) The energy envelope is the total amount of energy available to do things.
Maybe it’s just another day ending in “y” around here but I’ll volunteer we can never do enough to educate health care practitioners about PEM—the thing that breaks all the rules. We simply can never have enough caution and clarity surrounding PEM, particularly how to do no harm.
In trying to understand this confusing phenomenon, I’ve spent more times wrong than right. After all, as a researcher all your best ideas are still just hypotheses and as a clinician the best you’ll ever do is still considered practicing. The greater pursuit isn’t to be right…
it’s to *get it right.* Sometimes that critique is pointed and direct. There’s a lot of painful experiences and trauma out there. As someone studying a phenomenon I don’t live with, the best I can do is be a knowledgeable and empathetic interloper. But an interloper nevertheless.
The sooner we can move away from this still-pervasive idea that PEM is a feature of multiple conditions, the better. We’re still not seeing the forest for the trees. It’s hurting our ability to subgroup patients with different kinds of triggers that share common pathophysiology.
Here’s some data from a recent study we did with patients reporting PEM/PENE. Notice the overlap between Lyme, SARS-COV-2, Gulf War Illness and other conditions. Not all people with them have PEM/PENE and meet criteria for ME, but the ones who do…have ME. journals.sagepub.com/doi/10.3233/WO…
(Rolled up on the “Other” are enteroviruses, which I somehow forgot to put on the demographic form. Gah. 😩)
@twoShaws Some interesting notes while waiting for a flight: 🧵
The exercise cohort was not pre-screened for PEM because they did not fill out the DSQ-PEM. It's no secret that I'm not a huge fan of how investigators use this questionnaire, but they did not use the most common survey.
@twoShaws Instead, they used a visual analog scale survey and focused on a symptom cluster they found to be prevalent after CPET in a prior study. Maybe this is fine but using a different survey tool may compare apples with oranges. Seems odd to not screen for PEM using a common approach.
@twoShaws Seems even odder they wouldn't use the DSQ-PEM in people with suspected PEM because *mounts soap box and loudly inhales* IT IS IN SET OF COMMON DATA ELEMENTS CREATED BY A *checks notes and loudly inhales again* AN NIH WORKING GROUP. SO WHY WOULDN'T THEY USE THEIR OWN GUIDELINES?
I totally acknowledge the role of poor mental health in people with ME and ME-like/ME-subtypes of conditions. But to say there’s a reciprocal relationship between mental and physical health, and to leave it there, only tells part of the story and leaves out the *important* part.
Let me explain. If you stop at saying there’s a bidirectional relationship between mental and physical health, you might be tempted to assume, as a clinician, that you can intervene on both ends and those interventions should have exactly the same effect. After all, why bother…
…with figuring out what comes first—chickens and eggs—when you can have omelets *and* chicken tenders. That logic is so tempting. But here’s the fatal flaw. If someone is depressed, I’m going to encourage them to engage in pleasurable activities. Like going to take a nice walk.