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To try to keep feelings from being hurt, I think what you're saying could be said differently. The poster, and all the people who have used this program, probably don't think it's pseudoscience, so a question like this with no reason given for asking probably comes across as rather odd and hard...

Wow, an article about your blog from ME Research UK. Congratulations! ME Research UK: 'The “most interesting ME/CFS research studies of the year” included work from the DecodeME team, Assistant Professor Rob Wüst, Dr Bupesh Prusty, Dr Nuno Sepúlveda, and Professor Carmen Schiebenbogen

Why a red flag if they're studying patients with fatigue-associated long COVID, not necessarily PEM LC? My understanding/sense is that there are many with fatigue due to LC but they don't necessarily have PEM.

For some reason, this was posted to a different preprint server. The only substantive change to the abstract was replacing "PASC" with "long COVID". And the author list looks slightly different. Persistent Immune Dysregulation during Long COVID is Manifested in Antibodies Targeting Envelope and...

REGENECYTE cord blood cell therapy in post-COVID syndrome: a phase IIa randomized, placebo-controlled trial [Line breaks added] Background Post-COVID syndrome affects a substantial proportion of individuals worldwide and imposes significant healthcare and economic burdens. Fatigue is one of...

Table 5: It looks like alleles of this haplotype increase risk of neuropathies. This is the same haplotype that looked to be protective against ME/CFS in Lande 2020, with supporting evidence from other studies:

Also DecodeME. While it didn't quite reach the genome-wide significance threshold, it had a p-value of 2.48x10-7, so there's still a good chance it's a real finding. The locus can be seen in this post.

Yeah. Well more specifically no genetic difference in this cohort. It could still be involved without having significant mutations.

It doesn't appear to be:

The whole concept of ME/CFS seems less helpful to me as a whole than just the concept of PEM. ME/CFS seems like a bunch of random symptoms put together because they seem to somewhat occur together and which help put people in boxes at the doctor's office. And even with this ME/CFS diagnosis...

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...