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

If you tell any sensible person "if you do this, it could hurt" this person might be less likely to do this thing compared to a person that knows "this won't do anything to me". This once again puts into question whether the authors weren't forcing a certain effort preference onto the participants in the trial.

 

I also hit a paywall.

 

But in ME/CFS patients, pieces of the virus or bacteria may linger in the body and continue to stimulate the immune system long after the infection should have resolved.

Except that they didn't find that and it's a theory older than the hills.
Apparently it is also good news that the problem is 'functional'.

It is interesting that Nath seems to do all the PR work. And at least he seems to steer clear of making 'effort preference' the selling point.

 

gift articles:
https://wapo.st/43rJMoS

https://wapo.st/4akWLLb

 

Many thanks @cfsandmore

Reading the first article I was struck by quote

“Researchers told her that, on any given task, she might stress her body in a way that could undo all her progress. “They would remind me each day that this could be the last exercise you’re able to do,” she said. They’d regularly ask her if she was sure she wanted to continue. They also explained that, unlike many clinical trials, this one didn’t offer treatment. Participation was not going to make her better.”

Although there may be ethical reasons for this warning, as already pointed out above, this makes a total mockery of any claim of controlling when trying to claim differences between the people with ME and the healthy volunteers in relation to whatever they might mean by ‘effort preference’.

 

ME Research UK

The extensive media coverage of the recent NIH ME/CFS deep phenotyping study has likely resulted in increased public awareness of ME/CFS. The study demonstrates several biological abnormalities in ME/CFS, including immune dysregulation, autonomic dysfunction, and reduced cardiorespiratory performance. However, there have been concerns about the paper's analysis, including in relation to the limited discussion of post-exertional malaise and frequent references to "effort preference".

Given the complexity of the paper, we will be providing a four-part article, with an overview today, and more detailed discussions next week.

Part 1. Overview: https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-part-1-overview

---

ME Research UK

Following last week's general overview of the NIH ME/CFS deep phenotyping study, part 2 of our article provides a description of the methods used in the study. And there'll be more later in the week.

Part 2. Methods: https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-part-2-methods

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

---

ME Research UK

Continuing our look at the NIH ME/CFS deep phenotyping study, part 3 of our article presents the results reported in the study. You can read the final part of our article tomorrow morning.
Part 3.
Results: https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-part-3-results

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

---

The final part of ME Research UK's look at the NIH ME/CFS deep phenotyping study which discusses the significance of the study findings.
Part 4. Discussion: https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-part-4-discussion

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

 

That's actually shockingly bad, if true.

 

Almost like they are trying to instil some sort of fear into the patient group?

Would those cautions cause patients to (even sub consciously) choose to avoid extra effort?

Fear avoidance & effort preference anyone?

If that advice, given to the patient group, IS accurate then it is surely going to cause a bias in the direction of the BSP notions.

 

Sharing from today. Healio: '‘There must be a persistent antigen’: NIH researcher discusses new PI-ME/CFS data’

https://www.healio.com/news/rheumat...gen-nih-researcher-discusses-new-pimecfs-data

 

It is was if Nath is at the stage of knowledge of ME I was in during the first 3 months of getting interested in it - before going to an IiME conference. As if he has never been to an ME science meeting or read the literature or stopped by S4ME.

 

@Trish @Dakota15

Trish said commenter research misconduct was to be discussed in this thread. I’ve not seen any here. Not sure how to search for it in this thread.
Tagging Dakota bc I saw a few recent comments from you on misconduct.

I am severe and bad day but wanted to put this out there.

Has anyone looked into Type 1/2 error (false negative, false positive) as misconduct - misapplication of statistical analysis? In short not finding evidence of “a difference in strength” is not the same as finding evidence of “no difference”. Especially since sample sizes were so low - 17 questionably selected, and only 8 for CPET and grip test.

The main conclusion hinges on there not being a difference in strength, which was not demonstrated.

I am very weak and shaky right now. And mentally hindered. I haven’t been able to look at this more closely.

My career was in statistics, but not research. I'd love to look into more examples of research misconduct and this type of error. And I’m curious if any of you have explored it.

Trying to look through these as I have strength.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5723807/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4320765/

 

Merged thread

Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

News but not new news

https://www.sciencealert.com/landma...-fatigue-syndrome-is-unambiguously-biological

 

“Unambiguously biological”
but also
"Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform."

 

Jason Leonard has a critique of the study too.

https://www.medpagetoday.com/opinio...d=nl_secondopinion_2024-03-24&eun=g2174355d0r

 

He seems a bit surprised/embarrassed by the pushback.

 

this is a critique of the CDC's prevalence study, not of the NIH study.

 

From Todd Davenport.

https://twitter.com/user/status/1771927407370649800

Hey @NatureComms. When will you explain why your editors think it’s acceptable for Dr. Anthony Komaroff to be listed as participating as a case adjudicator, acknowledged as providing helpful comments on the manuscript, and listed as a peer reviewer of the Walitt et al study?


Where I come from, that sounds like an irremediable conflict of interest and, at the very least, playing footsie with research misconduct. This paper needs to be retracted and put through a fair peer review process like would be expected of anyone else submitting to the journal.

And before we get too far down the road of claiming the people and process associated with peer review are entitled to confidentiality, masking people and process should not be used to cover up potential irregularities. Not even attorney-client privilege covers committing crimes.

If folks can’t bring the same energy against irregular editorial decisions in the famous journals, you’ll have to spare me your righteous indignation over dodgy peer review processes and editorial practices at all those predatory journals.

They aren’t as different as you think.

 

ME/CFS may be caused by an imbalance in the brain
"We may have identified the physiological centre of fatigue," says the researcher behind a comprehensive study that has received a lot of attention.

Vegard Bruun Bratholm Wyller is the head of research at the Department of Pediatrics at Akershus University Hospital, and professor at the University of Oslo's Institute of Clinical Medicine.

He has been researching ME/CFS since 2003.

Wyller previously explained ME/CFS as being due to a hypersensitivity in the brain. This leads to signals from the outside world being overinterpreted because the nervous system is on continuous high alert.

"The findings in the new study fit very well with both what I have said and with a number of studies about the central mechanism of fatigue," he tells sciencenorway.no.

But Avindra Nath, senior author of the study, tells The New York Times that the results confirm that ME/CFS is biological, not psychological.

Wyller thinks this statement goes further than the study has evidence to support.
“It’s highly unusual to make a distinction between the biological and the psychological brain. There's a lot of research showing that such a distinction can't be made," he says.

The brain is not damaged

The finding in Nath's study concerns a functional change in the brain that disrupts how ME/CFS patients handle exertion and fatigue. “This doesn’t mean that the brain is damaged or broken in any way. The change lies in how the brain functions in people with ME. It might be that their brain is continuing to respond as if the body is ill, even though the infection is long gone,” says Wyller.
Our brains are constantly working to predict what will happen next.

“If your brain tells you that a task is much more demanding than it actually is, then you won’t be able to mobilise the necessary areas of the brain to do the task. This aligns well with what we generally know about fatigue, regardless of whether we’re talking about ME or other forms of fatigue,” he says.

https://www.sciencenorway.no/chroni...e-caused-by-an-imbalance-in-the-brain/2340918