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It’s a good idea. I think it would be helpful to also assess comorbidities. It would also be helpful to have a minimum duration for PEM to rule stop exertional intolerance scoring. .

Further evidence clinics don't help Taking a step back, it looks to me as if these findings show that the clinic made little meaningful difference to the people they were treating. In fact, the results look similar to those for the Pace trial control group (standardised medical care) at 12...

Pretty ill, but commenting on this as I was tagged, and there seems to be some discussion about it. I completely agree that our blog is not a good source for a prevalence estimate in an official report I can’t even remember if this blog was published by Chris or myself, and I’m far too ill...

"How to unravel the complexities of virus-induced diseases, such as Long Covid and ME/CFS." This is an excellent editorial, and I wish I knew who its authors were. In a nutshell: linking viruses to long-term disease is complex, but with careful and smart research, it can be done. Two...

"biomolecular tests are finally in development" If only.

@Hubris the comparison with prison, where you also get a release date, and with needing to a wheelchair is very apt. The other one that strikes me is the impossibility of a bucket list I don't envy people with progressive/terminal diseases. But I borrowed the illnesses bucket list idea in the...

Great quotes from Ed Yong and those he interviewed. "PEM is the annihilation of possibility." Brilliant, and you could the same about ME, especially severe ME. Daria Oller, on being told she is depressed and unmotivated. She is part of a support group of 1,500 endurance athletes with long...

This is a conundrum. Response bias does not go away if subjective measures are used in unblinded trials, e.g. for pain treatments. One option might be to set a higher threshold for success, e.g. a 0.75 SD gain instead of 0.5. And it might still be worth checking that the subjective gains (even...

Origin of the phrase post-exertional malaise Interesting thanks. edited for clarity So maybe the sequence of events goes something like this 1988: The previous CFS definition, Holmes, came out (see above) and did not include the term PEM, instead using: Prolonged (24 hours or greater)...

I was basing that on something that Tony Komaroff had said/written (sorry, can’t remember where). That would tie in with his 1991 research you mentioned, presumably it was that that fed into the 92 definition. Though the fact, they use the term postexertional malaise in the abstract without...

Have you thought of contacting Maureen Hansen to ask if she’s done or considered the studies you suggest? I think you would get a response.

Good to hear that it might not be surprising not to see a signal of CD8 exhaustion in the single cell RNA data they already have. it’s great to have these insights from the lab.

With pretty much all hypotheses, a GWAS study is a good place to look for confirmatory data. The unknown is whether or not DecodeME will be big enough to pick up most signals. Firstly, until you've done a GWAS, you won't know how strong the genetic signal is (unless you already have big robust...

RE expecting to see signs of CD8 T-cell exhaustion in the RNA data: Thanks. This 2019 review says similar CD8+ T cell exhaustion Exhausted T cells are characterized by progressive loss of effector functions (cytokine production and killing function), expression of multiple inhibitory...

This is certainly interesting work, particularly the new, unpublished findings about the “exhausted CD8 T cells signature” of PD-1 and transcription factors. And I like the way that it builds from the early metabolic work into the flow cytometry stuff and the link into the single-cell RNA work...

it was, but it seems to be very accurate. In other words, it’s not clear that this somatic symptoms are particularly helpful in diagnosing depression, while they drag in lots of non-depressed people with chronic illnesses. ultimately, you need a clinician to diagnose depression, and I’m not...

I did look into this at one point. Try the PHQ-2 https://www.hiv.uw.edu/page/mental-health-screening/phq-2 This drops all the somatic symptoms, and instead focuses on two simple qualities: – feeling low. – lack of pleasure There is some published research that compares the PHQ-two with the...

Thanks for such a helpful explanation. I agree that the concern is they use a black box method. I think the idea with decodeme is to take a sample, randomly split it into two cohorts, and then see if they can replicate the results from the test cohort in the replication one. I think that...

Because it’s a combinatorial approach, rather than the traditional GWAS, single – SNP approach, yes, this is a meaningful cohort. I haven’t read the paper and I’m not sure how clear cut the findings are. I’d like to see the results replicated/validated in independent cohorts. They say they’re...

@chillier thanks for the very helpful analysis and explanation (and for confirming that it is the same salt concentration as used in Ron Davis' experiment). It looks interesting, but they don’t replicate the nanoneedle findings. However, this experiment seems to have very significant...