Todd Davenport Profile picture
Feb 21 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

May 7
I spoke with members of the NIH RECOVER oversight committee in a meeting that was going to include the RECOVER-ENERGIZE PI before it didn't. My input was to include pacing in an adaptive design to ensure participants could move in and out of exercise groups if they crashed.
Instead, what we got was the UK PACE trial without the CBT arm. In other words, repeating the same mistakes at scale that we've already made with ME/CFS. Pacing is a core competency of attempting to live with PEM, not a separate intervention to be compared to others.
The current conceptualization of RECOVER-ENERGIZE fails to reflect the reality of PEM and how strategies to balance activity with rest are used to manage PEM. So, not only is the trial unrealistic, it's unlikely to balance risks and harms to participants. It shouldn't pass IRB.
Read 9 tweets
Apr 28
Exercising in Long Covid is the source of a lot of discussion on here because we know about a subset people with the disease for whom exercise may be harmful. I have been looking this figure for the past 3 days. There are some issues I'd like to point out. sportsmedicine-open.springeropen.com/articles/10.11…
Image
First, the presence of PEM is a(n absolute or relative) contraindication to physical exercise (depending on many factors). So, the top two boxes of the chart don't make sense together because ruling out contraindications to physical exercise would necessitate ruling out PEM.
Second, I really appreciate the consideration of PEM and PEM staging because I think they do matter. Defining these stages based on the DSQ-PEM may not be valid because the tool was not set up to do this. It is best positioned as the start of a conversation, not the end of one.
Read 20 tweets
Apr 25
This tweet forms the basis for a whole clinical masterclass in "the energy system is broken and all the pacing in the world probably won't fix it enough to respond normally, so stop acting like this is a realistic expectation."
A clinician asking a patient living with PEM to pace on one hand and exercise with the other is usually the living embodiment of the expression "robbing Peter to pay Paul." Worse, we are asking the patient to do less of what they want/need to do in service of an exercise program.
If you've ever lived on a budget, you understand this idea. You have a fixed amount of money. Things like paying a financial adviser might be a fine a choice, but it takes away from basic stuff like buying ramen noodles. Most people have to prioritize based on their own budgets.
Read 5 tweets
Apr 24
@eskabadu Thanks for this interesting question and set of observations. I appreciate you sharing them, as I also appreciate the chance to share. In the first part of the thread, you asked whether I think CPET measures PEM or the energy deficit associated with it. I think it is the latter.
@eskabadu My expertise involves two-day CPETs. In this methodology, a first CPET is used as a physical stressor (more on stressors in a minute) to *induce* PEM. A second CPET 24 hours after the first one is then used to measure the physiology of the post-exertional state.
@eskabadu The difference between the first and second test reflects changes associated with PEM in people with ME/CFS, as well as "ME-subtypes" of other health conditions. We don't expect big differences between tests. ME/CFS is the only one we see a big difference reliably, during PEM.
Read 11 tweets
Mar 18
Look, I’m always perfectly happy to accept interventions like talk therapy and brain retraining might be effective for any range of conditions. My only requirement is for sufficient data supporting the claim. Anecdotes, positive though they may be, need not apply.
I’ll never take away a person’s narrative about what they believe worked for them. In fact, more power to them. But I will always dispute that an individual’s personal narrative should generalize to others in the absence of adequate evidence suggesting that should be the case.
If you think bathing in pancake batter helped you recover from ME/CFS, then by all means continue bathing in all the pancake batter. But don’t suggest that others not bathing in pancake batter is the reason they’re still sick unless you have some kind of evidence it helps others.
Read 5 tweets
Mar 6
Here are some things PEM reliably is that post-exertional fatigue in other conditions reliably is not:
* delayed
* prolonged recovery time
* response to multiple types of exertion, not just physical
* meaningfully impairs function
* involves unusual symptoms that aren’t fatigue
If the module is talking about “scientific facts,” I hope some of the studies comparing and contrasting post-exertional signs and symptoms with deconditioning is getting included. That work is just a short Pubmed search away and it adds some important context to this discussion.
I mean, we’ve know for a quarter of a century or more that there’s a high degree of diagnostic concordance between “CFS” and fibromyalgia. But we’ve not yet had a study comparing conditions on the basis of PEM (not required for the Fukuda case definition). jamanetwork.com/journals/jamai…
Read 6 tweets

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