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I don't agree with this. "When we understand how ME/CFS actually works" then presumably we'll have mechanisms and possibly pathogenic variants that explain the symptoms. If we identify a variant that, for example, causes ion channels to not work in half of people with ME/CFS, do we say, "well I...

Sure. I'm just talking about the patients' perspective in order to possibly figure out how to make discussion about this more palatable. A real, official doctor gave them the diagnosis, so it can feel just as accepted or real as any other diagnosis to them.

Another point I think is worth noting is that MCAS and hEDS as diagnostic labels are potentially very important to patients, just as ME/CFS can be. They're 'official' diagnoses that can make a patient feel more secure about their symptoms being believed. And they provide community - like S4ME...

Metabolic Basis of Post-Infectious Sequelae After Ebola Virus Disease [Line breaks added] Abstract Ebola virus disease (EVD) survivors often present with clinical sequelae after acute disease resolution, called post-Ebola syndrome (PES). Why some survivors develop these sequelae and others...

Exhaled breath-based clusters in children with post-COVID condition [Line breaks added] Background: Pediatric post-COVID condition (PPCC) presents as a heterogeneous disease with a broad spectrum of symptoms. This study aimed to identify distinct phenotypes of PPCC through an unbiased...

Long COVID Does Not Impair Hemodynamic, Vascular, or Autonomic Responses to Maximal Exercise: Sex-Stratified Study in Young Adults [Line breaks added] Background/Objectives: Long COVID (LC) has been linked to fatigue, exercise intolerance, and autonomic dysfunction, but sex-stratified data...

Long COVID in the context of driving styles: An empirical study employing connected vehicle trajectory data [Line breaks added] Abstract This manuscript examines the "long-COVID" phenomenon, defined for this study as lasting changes in driving behavior stemming from pandemic-induced travel...

I don't know if these are looking at exactly the same thing, but this other study seems to be the opposite: Choroid plexus volume is enlarged in long COVID and associated with cognitive and brain changes, 2025, Diez-Cirarda et al Maybe someone with access could see if they cited the older...

Choroid plexus alterations in long COVID and their associations with IL-6 [Line breaks added] Abstract SARS-CoV-2 disrupts the choroid plexus (ChP) epithelium by binding to the ACE-2 receptor, causing blood cerebrospinal fluid barrier leakage and permitting interleukin (IL)-6 and pathogens...

So they used a tool to identify pathways of interest based on levels of lipids in this cohort. The tool gives genes associated with the pathways as well. The tool gave 25 genes that they could check the expression of using their previous RNA data, which I think was from the same cohort. 8 of...

Evaluating working memory functioning in individuals with myalgic encephalomyelitis/chronic fatigue syndrome: a systematic review and meta-analysis Penson, Maddison; Kelly, Kate [Line breaks added] Abstract Individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)...

Noting since lipids seem like something that would be changed with BMI:

From the letter to the editor, with bolding added: It's interesting that the authors think the most notable issue in a paper about developing a diagnostic test is that they didn't discuss alternative treatments. And for the only example of such a treatment that they give, the only references...

Here's another resource explaining pseudoreplication, and they say it's likely usually researchers just being unaware it's an issue: https://cambiotraining.github.io/stats-mixed-effects-models/materials/03-independence-psuedoreplication.html

Like another study from this group that was posted here, it looks like the p-values are artificially low due to pseudoreplication. I'll just quote the last time I said it, since it's the same issue, just with the sample size changed:

Now published: Human deep sleep facilitates cerebrospinal fluid dynamics linked to spontaneous brain oscillations and neural events [Line breaks added] Abstract How sleep maintains our healthy brain function has remained one of the biggest mysteries in neuroscience, medical settings, and...

A Psychobiological Approach to Gulf War Illness: Acute Exercise & DNA Methylation Alexander E. Boruch Thesis advisor: Dane B. Cook [Line breaks added] Background Gulf War Illness (GWI) is a form of chronic multi-symptom illness characterized by medically unexplained and heterogenous symptoms...

Ideological bias in the production of research findings Borjas, George J.; Breznau, Nate [Line breaks added] Abstract When studying policy-relevant topics, researchers’ policy preferences may shape analytical decisions and results interpretations. Detecting this bias is challenging because...

So it turns out there's already a new version of the preprint that updated this sentence to say CSE1L instead of OLFM4. It seems that something is wrong with the MedRxiv website, because it's not showing the "New Version Available" alert when I look at version 1. [Edit: They fixed the website.]...