@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?
@twoShaws The article isn't clear on what criteria they used to determine PEM objectively, but it is a problem they didn't use two-day CPET. It's the *decrease* in submaximal oxygen consumption and work rate that has emerged as an indicator of PEM. It's not perfect for many reasons, but...
@twoShaws ...what it avoids is erroneous conclusions based on a single CPET, in which people with PEM often resemble people who are deconditioned. We've learned you really need the second test in the post-exertional state if you're going to do this for the purpose the authors intended.
@twoShaws What the authors seem to have done is commit the same rookie mistake we frequently see, which is conflating PEM with exercise intolerance. PEM involves exercise intolerance, but exercise intolerance is not PEM. Rather, PEM is an impaired recovery response to an exertion. So, ...
@twoShaws ...you need a second CPET to make you're positioned to observe the decline in functioning. People will point to your single CPET results and say things like, "well, they're just deconditioned." And it would be hard to rebut that because you don't have data from a second test.
@twoShaws My colleagues and I are all for trying to make life easy for our future selves as a researchers by our present selves as a researchers thinking through these issues carefully and making good choices up front, so we don't end up with dodgy data. Life is hard enough as it is.
@twoShaws I'll also contribute that there is absolutely no way you can establish prevalence if the sample isn't representative of the population, and this sample isn't. The point estimates for people with and without PEM, as oddly defined as it is for this study, can be safely ignored.
@twoShaws At the end of the day, if the CPET results are not valid and the epidemiology of PEM isn't right, I have no idea what this study contributes. Maybe I'll think about it up in the air. Or maybe I'll just try to sleep it off. Stay tuned.
• • •
Missing some Tweet in this thread? You can try to
force a refresh
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.
Yet another trial that doesn't appear to track PEM properly through using the DSQ as designed and validated. They say DSQ Short Form but it appears from the supplemental tables they mean DSQ-PEM. DSQ was only assessed in a subset of participants at follow-up and not at baseline.
It is so unhelpful how investigators use validated measurements however they want because vibes. The prevalence of PEM in this study sample may be overestimated. The incomplete follow-up prevents our ability to determine the influence of PEM on the primary and secondary outcomes.
But, the same people will use these data and their standard messaging to carry on about how PEM isn't a big deal and people who talk about it are reinforcing negative illness perceptions that impair recovery, as though that explains the evidence for a broken aerobic metabolism.
Did you know that according to @NIH Common Data Elements Work Group on #MECFS, assessment for #PEM is a two-stage process involving the use of a questionnaire followed by a confirmation process? Most studies on PEM only use the symptom screening portion, but this is not specific.
Did you know few exercise studies in Long Covid purporting to use the DSQ-PEM use both stages of the PEM scoring or the (unmodified) questionnaire as originally validated? Incomplete use and bootleg versions seriously compromise inferences about the effect exercise has on PEM.
Did you know even using the full scoring of the unmodified version of DSQ-PEM, it only has about a 61% positive predictive value, meaning that 61% of people with positive survey results will turn out to have a diagnosis of ME/CFS vs. multiple sclerosis and post-polio syndrome?
E. Coli is endemic, i.e. never going way. Given this, under what conditions will you advocate ever stopping washing your hands after using the restroom or coming into contact with contaminated material?
Sexually transmitted infections are endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping the use of evidence based mitigation methods like condoms, vaccination, behavioral counseling, and prophylaxis?
Influenza is endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping cough and hand hygiene, vaccination, ventilation, masking, and staying home when you’re sick?
@SteveFifield3 @KatyBruce108 @CaroleBruce17 @MEResearchUK @Invest_in_ME @OpenMedF @polybioRF @VirusesImmunity @mecfsbiobank @PhysiosForME @resiapretorius @dbkell @OxMEDiscovery @BhupeshPrusty I’d love to talk about how lack of funding and venues to share peer reviewed work have silenced ME research and researchers over time, and has limited progress. That’s influenced my whole career. It seems to be the censorship everyone’s complaining about, hiding in plain sight.
@SteveFifield3 @KatyBruce108 @CaroleBruce17 @MEResearchUK @Invest_in_ME @OpenMedF @polybioRF @VirusesImmunity @mecfsbiobank @PhysiosForME @resiapretorius @dbkell @OxMEDiscovery @BhupeshPrusty It would be fantastic to talk about the reviewer comments I *still* get that dismiss infection associated chronic diseases as psychological, and now neurological, despite the physiological data we’ve cultivated *over many years* and *replicated by others* showing those are false.
@SteveFifield3 @KatyBruce108 @CaroleBruce17 @MEResearchUK @Invest_in_ME @OpenMedF @polybioRF @VirusesImmunity @mecfsbiobank @PhysiosForME @resiapretorius @dbkell @OxMEDiscovery @BhupeshPrusty It would be gratifying to discuss the implications of researching ME/CFS on academic careers. The firings, reassignments, denials of tenure, moves to other institutions, and exits from this field of research. Censorship? You bet. Assaults on free speech and academic freedom.
I'm struggling with how cognitive dysfunction came to be considered part of deconditioning. We published data suggesting it isn't...11 years ago. If a patient or potential research participant reports cognitive dysfunction, they more likely have PEM/PENE. pubmed.ncbi.nlm.nih.gov/21208154/
We also published on this dataset indicating self-reported cognitive dysfunction was a robust symptom to differentiate between women with ME/CFS and matched sedentary women who are deconditioned. pubmed.ncbi.nlm.nih.gov/36938769/
Instead of planning neurocognitive testing as an end point to an exercise trial, maybe instead we shouldn't enroll people with self reported cognitive dysfunction because we've already shown that cognitive dysfunction is more associated with PEM/PENE than deconditioning.