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Relevant data so far on which other illness do or don’t have PEM We know next to nothing about the existence or extent of PEM in other illnesses, despite it often being described as unique to ME/CFS. The term was coined by medics for the 1994 CDC/Fukuda criteria because they knew of no term...

I think it would help PwME if we had a short questionnaire that does a good job of identifying postexertional malaise (PEM), the cardinal symptom of this illness. It could be useful in two ways: 1. Doctors, especially those in primary care, could use it to help diagnose people who have ME/CFS...

Interesting. I haven't looked to see if any of the genes highlighted here match with DecodeME findings. I can't access the CFS page as it doesn't support mobile browsers. How many CFS cases of the reporting from UKB? There are several different UKB definitions available, I think amounting to...

Yes, and it's a nightmare to untangle. The DecodeME analysis restricted itself to people with the white European ancestry, which simplifies things – but not a lot. One reason why HLA analysis is so challenging – population stratification HLA varies enormously even in White Europeans...

My memory is terrible, but I I am not sure the Norwegian study had found HLA alleles that reached statistical significance (merely that they were promising). I wonder when the DecodeME HLA analysis will be done?

I'm not sure the relatively small sample size can support such detailed conclusions. I believe there's a rule of thumb in statistical modelling that you need 10 times as many cases as parameters. I'm not sure how many "cases" we have in this experiment, given that it's looking at male versus...

Congratulations, @Tom Kindlon , on this award from Trinity and that standing innovation of large group of alumni, which made me tear up. If I may say so, you and Orla looked very dapper as well. This is richly deserved – you have achieved so much over the decades.

Interesting. Sian Leary was doing this job, and I would have expected her to be very good.

I agree with the grades don't bounce back straight away". But I think someone who is struggling a bit with lots of illness illnesses, including depression, it might think the symptoms last a long time if they go on for three or four hours, which is the kind of timescale that Lenny Jason, found...

I thought the PEM duration work by Lenny Jason was incredibly useful. I'm not sure about the rest. To me, what we really need is an instrument that researchers can use to identify if people have PEM as it's the cardinal symptom of this disease. I suspect that's not going to happen unless we do...

As far as I know, that's a first. An ME/CFS study with flaky methodology that the editor takes seriously and decides to retract despite opposition from the authors. We need a lot more of this.

I'm not sure much we can conclude from this. The problem with that survey is that it was of the general public, and we know if you ask the general public if they have ME or chronic fatigue syndrome, you're likely to get unreliable results. Louis Nacul found that for a British Columbia study...

This is such a powerful poem, Veronica. I think it's going to resonate with many people with this illness, as it does with me.

My consultant got permission for me to try it years ago when he was running a trial to use it to treat a different chronic condition. It's kind of workedto give me more to give me more energy. It also ended up in a relapse for obvious reasons. A couple of years later, when I was doing better...

An interesting comment on BlueSky: I had a look into some. Ingredients: * a low number P of patients * a huge list on N parameters * ignoring the minimum requirement P > 2^N or N < lb(P) * i.e. low variability Mathematically it‘s like investigating young males, projecting on older males AND...

The open science movement, which was the 1st to push replication hard as a solution for life science problems, has defined it broadly to include both direct replication of methods and trying to replicate the overall findings more generally. The first approach includes taking the original method...

Well, that sounds very sensible, and an enormous step forward. Trish – thanks for highlighting this critical information. for those of us using smaller phones, it's very hard to read a lot of pro text, which appears very small. So it would be good either to flag it in someway other than...

There's an old study by a guy called Brent, who I think at the time was a PhD candidate at Griffiths University in Queensland – I think it had nearly 300 patients and looked at NK killing activity.

Yes, borderline creepy – or "culturally insensitive". If it's eight years since you last gave, this might be a specific program to reactivate old donors. I know they suggested a "brief" phone/video call, and maybe they just want to quickly establish if you are likely to give again. I'm...

Everyone's different. But there's a lot of evidence from testing different approaches, that building relationships and talking to people elicits more donations than simply providing that information in writing.