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Chronic fatigue vs CFS and possible confusion between the two. The one potentially useful figure from this review is for the 9 studies (84.5k participants) of adults surveyed for both chronic fatigue (>6mo) and "CFS or CFS-like illnesses". (Note mostly questionnaire based of a general...

I very much like the use of disease controls in this study. Historically, the problem with the dePaul symptom questionnaire was that the questions on PEM. couldn’t distinguish between PEM. and exertion intolerance (the latter is common in many illnesses,). However, I thought the current...

Thank you, Veronica, for all the effort you put into crafting these fabulous poems. The Sestina to your mother issuch a beautiful exploration of the impact of illness on a carer as well as a patient and, even more, of your relationship with your mother, that evolved from it that it made me...

This is brilliant work. I’ve always wondered how a random data comparison would look for many different ME studies. clearly, not very good in this case.

@Andy posted some interesting data from a Lenny Jason, study about length of PEM (the dePaul symptom questionnaires questions on this are more about exertional intolerance). IIRC, the data clustered into two groups, a shorter duration of less than 14 hours, and a longer duration of more than...

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...