Todd Davenport Profile picture
Feb 21, 2024 11 tweets 2 min read Read on X
The conclusion of "alteration of effort preference" driving PEM from an underpowered study that blatantly misuses CPET in the face of all relevant research and clinical guidance for ME/CFS is what we get after years of developing the protocol and waiting for these results?
The sample size makes this study a glorified case series. In a heterogeneous condition like ME/CFS, there is no way 17 participants out of 217 screened is representative. But get this: not all the participants got all the endpoint measures. How can the authors infer causation?
For sure the CPET results are underpowered but there are some clear differences between groups. The authors interpret these differences as deconditioning, which is easy to do on the basis of a single CPET. That's why you need the second one completed in the post-exertional state.
One revealing thing from CPET was the fact the authors included obviously trained individuals in their analysis. Half of them performed at or above their age-predicted maximum heart rate. If you want to conclude PEM is deconditioning and altered effort preference, at least...
...make this comparison with sedentary people who are likely to be deconditioned instead of relatively fit individuals.
PEM is tricky because simply trying to measure it can induce it. The authors didn't grasp this important concept. The effort preference task is a lengthy complex choice reaction time task. This just sounds like the perfect way to induce cognitive PEM during a measurement.
So, there will be a lot more said about this study in the weeks and months to come, and most of it will be about how this study wasn't worth the resources, time, and waiting. For now I'll just contribute that Nature editorial staff were asleep at the wheel, ...
... there were plenty of people who had to do with this work who had reason to know better than what they put out both from basic scientific and content area perspectives, and this work is so poorly interpreted and so poorly reported that it should be retracted immediately.
This article reinforces every negative stereotype about PEM simply being a choice. It's so inconsistent with the findings of their own -omics analysis, to let alone the extant literature. And in light of that inconsistency, it's inhumane. People with ME deserve better than this.
There may be some useful details of this work stuck between the couch cushions, but they won't make the global headlines. What will make those headlines are people with ME are either lazy or crazy. Again.

What an utter and total waste of resources and good faith. I just can't.

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More from @sunsopeningband

Apr 1
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.
Read 5 tweets
Mar 17
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?
Read 6 tweets
Oct 31, 2024
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? An account called David McCunr says: “ COVID is endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping masking?”
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? David McCune, an account on Twitter, says “COVID is endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping masking?”
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? David McCune is a Twitter account who said, “ COVID is endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping masking?”
Read 4 tweets
Oct 25, 2024
@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.
Read 6 tweets
Aug 8, 2024
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.
Read 6 tweets
Aug 2, 2024
For those of you who are thinking I don't understand the @theNASEM Long Covid definition, here's my thought. All of the things in the circle that aren't crossed out (and more!) can be PEM/PENE. It all depends on the timing with activity.

That's it. That's the tweet. Image
Does that make other manifestations of Long Covid less valuable or worthy? Nope. But thinking about it as its own thing or an 'associated' condition is not helpful if half-ish or more of people with Long Covid identify that they have it.
And here's the last thing I'll say before I return my attention to my day job, which is mainly proving my identity to the various websites I need to log into. Early PEM/PENE is virtually indistinguishable from a prolonged or more severe post-viral activity recovery response.
Read 6 tweets

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