Post-Exertional Malaise in Long COVID: Subjective Reporting Versus Objective Assessment, 2025, Stussman, Nath, Walitt et al

I'm sure this is guiding the NIH RECOVER-ENERGIZE study. Ugh.

 

I think we'll have to wait for what the paper actually says. I do know of a few LC patients who suffer from shortness of breath following exercise and where this is considered to be PEM (which doesn't match what PEM is considered to be in the context of ME/CFS), so I wonder whether similar things might reflect some of the apparent disparities in the results. It's possible that the LC exercise study includes all sorts of different groups of people. I guess for LC one also has to know at what point in time the first questionnaires were filled out and when the exercise testing occured, due to natural recovery rates.

Presumably the LC patients are those that are part of the NIH exercise study, whilst the ME/CFS patients are from the intramural study?

I think what this study tell us is that people doing CPET studies have to ask about the presence of PEM (before and after) and can't just assume they are studying PEM, much like people on S4ME have been advocating for.

 

I am not able to read the full paper atm, but some contextual things about it are very important to note, I think.

Lead author, Barbara Stussman, has no background as researcher in these types of ilnesses, let alone good knowledge about PEM. She built a career on surveying the use of alternative health practises for the NIH's have-you-tried-yoga division, and her publications are important for the NCCIH's main goal of integrating these practises into medicine.

She was a colleague of Walitt when he worked there, and I think she (along with a crew of other NCCIH employees) was recruited via Walitt into the ME/CFS intramural study.
I wrote an elaborate post on her background here, which I recommend reading.

Given that she is affiliated with the NINDS for this Long Covid paper (and earlier mentioned to do questionnaires on Long Covid and GWI patients), I expect that she is now an employee of Walitt's at his new (and second!) unit for "interoceptive disorders" at NINDS, which is part of his long-time effort to treat ME/CFS as a problem of subjective perception, and which ties in perfectly with the Koroshetz-approved interoception project the NCCIH is currently running in order to expand the use of complementary medicine (like mindfulness, yoga and CBT).

What Stussman and Walitt have been doing with PEM in the ME/CFS intramural study is disturbing, especially considering the context. It got sidelined to a questionnaire paper (despite Walitt's promise that the goal of the study was "to understand exactly what the biology of post-exertional malaise is") and that paper, like now this long covid one, nudges the reader into seeing PEM as a subjective perception and patients as unreliable narrators by pitting their reports against questionnaire answers and symptom reports after a single C-PET, just like they use an "exercise stressor" here.

This all fits with Walitt's "effort preference" creation and his directorship of the unit for Interoceptive Disorders where Walitt, according to his bio, focuses on "persons with disorders characterized by aversive symptoms that develop after exposures, such as infection" by which he means ME/CFS, Long Covid and GWI.

Walitt has a long history of trying to prove patients actually have abnormal sensations, see the document attached to this post, which includes a link to a 2009 study protocol, and this addition.

Spoiler: A bit more context and links

I have deep worries about what is happening at the NIH with the interoception project, both the NCCIH umbrella project and Walitt's unit at the NINDS. The NCCIH-led project is currently purposefully attempting to create an as-yet unexisting scientific foundation for their own redefined "interoception" definition (which goes two ways) in order to be able to declare illnesses mind-body problems that can be treated with non-medical practises, and I think it is vital for advocates to understand the context of papers such as these, as I personally think that the red carpet is being rolled out to pull ME/CFS and Long Covid into that, possibly as springing board with stuff Walitt and other former NCCIH employees produce as part of the NINDS unit.

I made a thread where I collected a bunch of puzzle pieces on that context. (I'm sorry that I have not been able to rework it into a shorter post/doc.)

A summary of my concerns is made in this post, although there is more to be added.

(I have not been following this topic at all since earlier last year. But there is e.g. the fact that the person who played a big role in the EEfRT test part of the intramural study was part of Walitt's clique at the NCCIH, or that Walitt, when asked to explain what he meant when he said the intramural study found that there was "a mismatch between what someone thinks they can achieve and what their bodies perform" in ME/CFS, used a 2022 hypothesis paper that very much post-dates Walitt's claims of ME/CFS as a disorder of perception that can be researched with brain imaging, and his decades-long habit of fMRI-ing fibro patients to prove that their illness is based in subjective perception (2009). (Walitt has been treating ME/CFS as an "interoceptive disorder" since at least 2010, and he was preparing neuroimaging studies to prove ME/CFS was a problem of subjective perception right before he was recruited into the NIH ME/CFS intramural study.)

 

The what in the what now? And what is this "observable" PEM they are speaking of here? I guess we'll find out.

They still seem to make the classic mistake of taking unrelated measurements and thinking they must be better than subjective reports, as long as they minimize the problem, I guess. The simple reality is that they don't have instruments to assess this, not that patients overestimate their subjective experience.

And they clearly still reject the notion of PEM, unwilling to change their misguided views, and its cumulative effect. In short they appear to have learned nothing and this is simply Walitt pushing his preferred ideological interpretation.

 

I had no idea it was only an 8 minute cycle at an easy pace. Is this across the board for a CPET?

 

A normal CPET is done like this:
Procedure

1. Attach electrocardiogram (ECG) electrodes and blood pressure cuff.
2. If using a bicycle ergometer, adjust seat to proper height level and null bike.
3. Obtain baseline ECG, blood pressure, and VO2/VCO2 measurements.
4. Begin exercise period and record data.
5. Patients are encouraged to exercise to their maximum endurance or until the nurse ends exercise due to symptoms like pain, HA, dizziness, syncope, excessive dyspnea, leg discomfort

Recovery period: 5 minutes or greater until patient returns to baseline.
https://stanfordhealthcare.org/medical-tests/c/cardiopulmonary-exercise-test.html

 

I'd agree with @EndME. The problem with LC is that it is so widely defined with ME/CFS as a subset. Since ME/CFS symptoms are part of LC, it's a possibility that some LC patients without ME/CFS could mistake other post-exertional effects as PEM, etc.

That is not to discount LC as not being as severe or disruptive. But there is no reason for them to suffer the indignities of ME/CFS if they don't actually have ME/CFS. The presence of PEM is an important indicator, so it's probably worthwhile to study the prevalence of PEM among LC population vis-a-vis ME/CFS relative to self-reports.

 

That combo would have my legs shaking too. I had a stationary bike in the earlier years and my heart rate was up within a few minutes with very little tension, my legs were shaking when I got off, but I can power walk for up to 50 minutes and climb a few flights of stairs on 'good' days w/o my heart rate going up too much. My legs don'ts shake. I find cycling much more difficult so I sold my stationary bike

 

It varies, I don't think there's a specific setup. I had one a few months ago for a cardiac check-up and it was a treadmill starting at a brisk pace, much faster than even the most energetic walking I did in the past 10 years.

I only made it to the 3rd step, about 4-5 minutes in, and my pulse was at 175. I'm much older now but last time I did a test (not medical, at a gym) I would be at lower than 100 for this. It was very difficult to walk afterward and it took me 3 days for the PEM to subside, but I don't think they accounted for that.

The test had a slight anomaly, and I will be having one at a hospital with a tracer, so I'll see if it's relatively standard or if each clinic has their own variation of it.