Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

This is from 2024, just catching up with an old post report:
Dakota15 said:
Science Quickly (SciAm), 3/14/24: "Large Study of ME/CFS Patients Reveal Measurable Physical Changes"

(12 min episode w/Avindra Nath & Brian Vastag - not sure I caught when it came out in March - thanks @B_V)

Nath: “One, we found that there was activation of the immune system in the ME/CFS patients. It was almost like the immune system was exhausted from being chronically activated.”

“Avi really hopes that this will lead to treatments. Even though the study didn't find so-called autoantibodies, which are a sign that the body is attacking itself, like some studies have found, it did find signs of B and T cell wonkiness, if you will. And the treatments could depend on your sex...So in women, you could try things like checkpoint inhibitors, which are used as a type of immunotherapy for cancer. And for men, you might be able to try various T cell therapies.”

Brian: "I feel like they need to do treatment trials, like that needs to be the next step. Patients are desperate, and patients need treatment, and we can't just wait to figure out the entire pathophysiology, like we need to start.”

Hosts (Tanya Lewis & Josh Fischman, Scientific American's senior health editors): "Well, I'm glad to hear that they're starting, but what about long COVID? Could this research benefit people with that? Yeah, it might. There's certainly a lot more interest in these conditions now, given how many people have long COVID....That's really important, because ME/CFS, and Long COVID both take a real toll. They ruin lives.”
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Davenport:
Walitt et al.2 characterized PEM as discomfort associated with exertion (p. 2) and the description of patients’ behavioral adjustments as attempts to avoid discomfort (p. 10), which appears to downplay the severity of PEM. For individuals with ME/CFS, PEM is not merely discomfort. Rather, it involves a profound exacerbation of a whole host of signs and symptoms, further reduction in functioning, and inability to recover following even minor physical or cognitive exertion1,12.
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Walitt:
In the commentary, the Commentators “challenge [Walitt, et al.]’s conclusions by suggesting the key symptom, exertion intolerance, along with the patient’s strategy to avoid the debilitating PEM, are the most likely explanations for the patient’s reduced activity.” We agree and posit that the strategy described by the Commentators is an effort preference. As explained above this effort preference is not an overt ‘voluntary’ strategy nor it is an intentional basis for exerting less energy. As stated in our paper, “Conscious and unconscious behavioral alterations to pace and avoid discomfort may underlie the differential performance observed”. It seems that, in essence, the Commentators agree with us.
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So Walitt et al are outright lying about what Davenport et al said. They explicitly mentioned that pacing is not to avoid discomfort.
 
I also saw this article about the response of Wallitt et al., so maybe they have sent out a press release (about their own response naturally):

Myalgic Encephalomyelitis: Beyond Effort and Deconditioning

'In a compelling and much-needed scientific dialogue, a fresh reply has emerged in the ongoing debate surrounding the elusive and debilitating condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The reply, authored by Walitt, Chin, Drinkard, and colleagues, responds directly to claims that dismiss altered effort and deconditioning as invalid explanations for ME/CFS. Published in Nature Communications, this discourse delves deep into the neurobiological and physiological underpinnings of the syndrome, challenging misconceptions that have long clouded both clinical understanding and patient care."​
 
Wyva said:
I also saw this article about the response of Wallitt et al., so maybe they have sent out a press release (about their own response naturally):

Myalgic Encephalomyelitis: Beyond Effort and Deconditioning

'In a compelling and much-needed scientific dialogue, a fresh reply has emerged in the ongoing debate surrounding the elusive and debilitating condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The reply, authored by Walitt, Chin, Drinkard, and colleagues, responds directly to claims that dismiss altered effort and deconditioning as invalid explanations for ME/CFS. Published in Nature Communications, this discourse delves deep into the neurobiological and physiological underpinnings of the syndrome, challenging misconceptions that have long clouded both clinical understanding and patient care."​
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Wow that is absolutely meaningless obscurantist babble.
 
Walitt:
In conclusion, our data shows that fatigue, altered aerobic respiration, and muscle deconditioning are not the features that best define the moment-to-moment motor behavior of PI-ME/CFS. This seems to be a crucially important observation in a disorder currently labeled ‘Chronic Fatigue Syndrome’. A better understanding of the biology of effort preference, rather than the biology of fatigue, may be the science that best serves those with PI-ME/CFS.
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This has to be the most ridiculous take I’ve ever read.

If living with PEM is what causes the lowered effort preference (assuming it even exists, which other responses have questioned), then understanding the biology of PEM is key to best serve pwME/CFS.

Walitt et al’s suggestion is akin to saying that the way to best serve people with broken legs is to figure out why they don’t want to walk on it before it’s sufficiently healed, instead of figuring out how to get it to heal the best or more quickly, or even to avoid the fracture in the first place.
 
Utsikt said:
Walitt:

A better understanding of the biology of effort preference, rather than the biology of fatigue, may be the science that best serves those with PI-ME/CFS.
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One of the other authors on the paper was quoted saying the 'effort preference' stuff wasn't an important finding and the interesting bit was the immunological results. (Sorry, can't remember if it was Nath or one of the others, or if the quote was on this thread or one of the others. I think it was at some presentation or conference.)
 
Eleanor said:
One of the other authors on the paper was quoted saying the 'effort preference' stuff wasn't an important finding and the interesting bit was the immunological results. (Sorry, can't remember if it was Nath or one of the others, or if the quote was on this thread or one of the others. I think it was at some presentation or conference.)
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Yes I think Nath has essentially been played by Wallitt and the interroception crew into legitimising their bullshit.

This seems to be a disturbingly common thing in research and academia. Take over a rival discipline and remodel it in your image like an academic cuckoo . Happened to my partners masters degree (in the psychology field). Also happening with BACME and the MEA.
 
Utsikt said:
Walitt:

This has to be the most ridiculous take I’ve ever read.

If living with PEM is what causes the lowered effort preference (assuming it even exists, which other responses have questioned), then understanding the biology of PEM is key to best serve pwME/CFS.

Walitt et al’s suggestion is akin to saying that the way to best serve people with broken legs is to figure out why they don’t want to walk on it before it’s sufficiently healed, instead of figuring out how to get it to heal the best or more quickly, or even to avoid the fracture in the first place.
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Yes

And on top of that of course they didn't for example calibrate their instrument to make sure that everyone was able to do it at the start etc. So of course he is happy to try and get rid of the fatigue part because some pwme couldn't complete the hard tasks in the initial sessions.

So it wasn't about choosing as he keeps trying to push (and the lines keep sounding more deluded - as if someone is persuaded by self-talking themselves something to be true they want to be true) other than 'do you want to fail on the hard task or find a strategy where you can pass some'

Like suggesting that when he lined up people with broken legs who'd all done trial runs and some of whom couldn't do that distance in the time given to complete were making the same choice as healthy persons who could when given a task of which times (vs incentives) do you choose to try and run the further distance ie the less completable task vs the one that they can complete.

In that guise him having called it choice or preference is plain disability bigotry as it equates to calling 'can't' a choice merely for 'making the best' and indeed, if equated to life the outcome of the rewards wasn't different due to this, knowing that they'd been consciously (on the part of the PIs) been put into a test where they were handicapped from one of the options, and that choosing hard 'more' was neither the aim nor the better strategy so [his 'new' interpretation vs what the tool and its instructions were designed to test] did not relate at all to the game or its instructions.

I actually start thinking of the declarations of Helsinki and ethics in this one given how much coercion/manipulation ie stitch-up is involved using a made-up metric for a tool that was also deliberately not calibrated so that disabled people couldn’t complete it as non-disabled could. Then using the same instructions as if it was ‘reward motivation’ (not choice) to manipulation non-completion impact ie forcing actions from those disabled unable to complete then claiming they were ‘choices’ rather than forced and coerced by mis-selling the inferences the EFfrt could make.

ie one could say that it was actually Wallitt et al who had choice in the task and not the disabled competitors due to their decision not to calibrate and instead actively make the hard choice on the was not accessible ie not choosable to those in that situation - he can call it what he likes and try and use the term 'choice' or 'preference' but it doesn't make what he was offering either of those in the true meaning of those words or the task.

So it is like a PI choosing to set a task that is just a bit further than the persons with the broken legs could walk - then claiming it was a choice for the person with the broken leg, even though many chose it and failed to complete it. PLus of course misleading participants on how it would be interpreted by post-hoc coming up with some new skewed 'metric' that wasn't in line with what could in fact be drawn from such a tool. Maybe that was another mis-reading of instructions in how to operationalise it?

They had no chance and therefore no choice as participants due to the choice made by the PIs to avoid calibrating the tool as per instructions thereby making it inaccessible. Then trying to hope saying 'they chose' loud enough will make it true - and worse sticking name-calling on it by calling what was caused by their choices someone else's 'effort preference' which doesn't to many sound far of inferences of 'could do it if you chose [to make the effort]' which their very own results explicitly disprove.

I really think he needs to learn to drop this one. Strategically waiting 18months for the analysis so many did within days to somehow be forgotten or not read by bystanders to try and pitch the same old twisted claims as if they aren't bigotry overshadowing what was actually found by playing sophist with words in a reply to something isn't making it look any more sensible or rational as a response
 
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I'd love to hear @Snow Leopard's thoughts on figure 1 in Walitt et al.'s response to Davenport et al. I don't see how this suggests activity avoidance. To me it just looks like people who struggle with CPET also struggle with everyday life. Doesn't tell us anything about why they struggle with either.

Across multiple measurements, we noted that impaired physical performance occurs prior to a level of muscular work that taxes oxidative metabolism. This phenomenon can be observed in our CPET and free-living actigraphy data (Welcome - mapMECFS). In Fig. 1, we plot each participant’s daily minutes of moderate activity against their VO2 at the anaerobic threshold. Five PI-ME/CFS participants had anaerobic thresholds below 3 metabolic equivalent of task units (METs), the lower limit of moderate intensity for healthy individuals [Haskell et al. 2007]. Of these, two attempted less than one minute of moderate activity a day, suggestive of activity avoidance. Conversely, three participants had anaerobic thresholds above 3 METs. These participants had lower moderate activity counts compared to healthy volunteers with similar anaerobic thresholds. [my bolding and my link to Haskell]
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Trish said:
Author list:
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It's really heartening to have these people standing up for us. Sincere thanks to all.
@dave30th @Mark Vink

We now have two published responses to the NIH study: Kirvin-Quamme et al. 2025 and Davenport et al. 2025. Hopefully it is clear to others, even if not to Walitt et al., that "effort preference" explains diddly squat in ME/CFS.
 
Nightsong said:
Davenport et al have a published commentary in Nature Comms' Matters Arising today:

Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome [ | PDF link ]

Walitt et al have responded:

Link | PDF
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Given this was far from a cheap or cost effective study there are so many choices not to do things properly such as

the PIs choosing to only do one day of a 2-day CPET

the PIs choosing to ignore instructions on calibrating the EfFrt tool thereby stitching up those who couldn't complete the challenge of hard task in the timeframe before the task of 'choosing' even began.


then yes it is clear pwme have suffered at the hands of some choosing to put in less effort than they perhaps might, and in comparison to expectations and norms in other areas and diseases.

What sleight of hand for Walitt to pretend that the subject doing the choice was the patients rather than them being the object of the consequences of others'.

All because it feels someone is determined to try and sanitise the idea calling disability relation to illness and exhaustion ie of a certain type 'a choice' or as the predecessors in such bigotry termed it 'avoidance'

What's their excuse?

Plus I assume they are all perfectly capable of reading properly unless academic standards have dropped that low for people in certain areas even when they are given over a year to read a small amount of text so it wasn't due to them mis-reading in a rush.

Deliberately answering a different question that you have invented in order to avoid one you don't like is even criticised in politics, so whilst I would say that [politics] is what this would then appear to be rather than an academic science or even research-based answer or reply (as it isn't answering the matters outlined).

This appears to be aiming to use their 'right to reply' instead as propaganda where they are putting extensive words into the mouth of that were never said ie inventions.

Which is surely a whole new line being crossed regarding academic reputations and policy?
 
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