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More in line with how the patient community reports and understands PEM, which seems quite different from the exertion intolerance that it is often confused with. I think in many studies, researchers need to screen or select patients using questionnaires as DecodeME had to. Luckily we had smart...

The Common Data Elements previous description of PEM was quite useful as it highlighted the key components. Source: https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome

Not sure, the link you shared isn't explicit about this. I thought the Common Data Elements was mainly about selecting tools to recommend for use in research, rather than developing new ones. Perhaps someone on the forum knows more?

The long PEM questionnaire by the Jason group gives some interesting data on potential PEM-questions: Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey - PubMed The development of an instrument...

A lot of ME/CFS research already uses questionnaires to assess PEM, for example, for screening or diagnosing participants. So it would be valuable to have something that is better than the questions that are used today such as: do you have PEM, do you get tired after exertion, etc. Think it...

Looks like they tested more than 2000 peptides in a cohort of only 30 cases and 30 controls (with ME/CFS patients in both cases and controls).

Here's what I think the study did: A previous Norwegian study found a link between HLA-variants and ME/CFS. Two were risk factors (more common in ME/CFS) and two were protective (more common in controls). This study checked how well these 4 variants bind to human-herpes viruses (HHV). Turns...

Thanks @forestglip!

Agree, and would be happy to collaborate on something like this. As I see it we would have to make a list of PEM statements that reflect how patients understand the concept and are useful to detect ME/CFS. We would then need to test these in ME/CFS patients and disease controls to check the...

Posts moved from main DecodeME thread. --------------------------------------------------------- Could you also check the region above TAOK3 on chromosome 12? It was found to be associated with lupus according to the GWAS catalog...

Thanks for the useful analysis, especially the comments by Trish. I'm also a bit confused by the scoring system. What does it do or indicate? Assuming a higher score means a stronger indication of PEM, then there are a couple of issues. Having more triggers would be a stronger indication of...

Was wondering if TLR7 is important, wouldn't we expect to see differences in SNPs that influence the expression of TLR7? Haven't read the entire thread, so might have missed something.

Have little to add except that it looks really interesting. Made this summary of the results in case it is helpful to anyone. 1) Impressive study from Johns Hopkins researchers. They infected mice with SARS-CoV-2, found that female mice had a stronger immune response and more cognitive...

Yes, it's helpful in this regard. But also a bit disappointing that it then becomes a clash of eminence, and that the more detailed issues with methodology disappear in the background. Got the same impression with the Cochrane review and the Zeraatkar review on Long Covid.

Davenport et al. write: This isn't entirely on point IMHO. The test only took a couple of minutes, so the increasing symptoms and debility that patients experienced during the test should probably not be viewed as PEM. The term PEM is normally used to describe delayed worsening after the...

I think the focus on the 2-day CPET and deconditioning in the Davenport et al. letter is a bit besides the point. It would have been better if the journal had also published the other letter that focused on the problems with the EEfRt. Now Walitt et al. largely ignore these. The only info they...

On our blog, Paolo wrote: This is curious. When using the GenomicRanges and rtracklayer packages in R we only lost about 25.000 variants out of almost 9 million. FUMA/MAGMA report the same in the log file: “25262 positions did not align with the GRCh37 reference.”

Thanks, there's a section at the bottom with updates.

There's also this blog by Paolo Maccalini on the DecodeME results, focusing on the FUMA SNP2GENE analysis, which forestglip explored earlier in this thread. https://paolomaccallini.wordpress.com/2025/10/04/cell-type-analysis-of-decodeme-gwas-data/

Thanks. I misunderstood fine-mapping as a broad term encompassing gene prioritization (some tools and papers give that impression), but will update the text. Agree. If you click on one of the other SNPs with low p-value it does show the LD. Didn't mean to imply that a strong signal must mean...