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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.

That's an interesting approach, though it seems somewhat misdirected if you've only made a small donation way back. As a former fundraiser, it seems to me like a smart move to open up conversations with people you think can give in future. Maybe they will ask for money now (pretty likely), maybe...

Thanks for the explanation. I would still like to know how many individuals in the 247 pwme had identified LoF genes, and to see how that compares with what we know about heritability. Also, given the method, we would expect implicated genes to have a degree of consistency, as other genes that...

Does the study say how many individuals had at least one of these 115 risk genes? I'm still concerned that the number of genes is much too high, given the evidence we have on heritability. We know that some of the inherited risk is through the genetic signals identified by DecodeME , and these...

Thanks, that's good to know. But presumably that could substantially affect interpretation of the study if many of these repairs genes turn out not to be relevant. Do we know how many coding variants (intolerant of loss of function) a healthy person has? I'm trying to get a feel if it's a rare...

Participants were asked if the infection for either infectious mononucleosis (glandular fever) or Covid had been confirmed by a test. For mono, this would be a lab test, which is often done in severe cases. I can't remember if the Covid question includes the option includes a home test. The...

Okay, so this was a self-report of a healthcare professional diagnosis, supported by the DecodeME criteria, which required post-exertion malaise, a symptom pretty specific for ME/CFS. So, a fairly well defined cohort. But had it been varied, that would make it more likely to find nothing, not...

I didn't have the capacity to follow this thread properly when it came out, so I I'm coming back to it now. But this has been bugging me. We know that there is a heritable component to.ME/CFS, but it's not that common. I think there's an Utah registry study that gave heritability at about...

Of course, and that's true of a large majority of ME/CFS studies, with DecodeME as a spectacular exception. Representative samples are rare in this field.

I'm sure I read that the compass – 32 questionnaire was shown to be a poor measure of objectively measured autonomic problems. But that report came out after this work would've been done. @ME/CFS Science Blog – 00 I misremembering something you posted? These are the small number of very...

Thanks. That's more information that I was expecting. Yes, maybe AI will help standardise results.

Can you remember any details of that, and does it refer to SFN testing in general? I had always wondered how reliable the findings were, but hadn't seen anything looking at the methodology?

I'm sure that's been done a few times. And quite a few of those severe ended up halfway between health controls and mild/moderate, sometimes with generous explanations of how this makes sense. Which makes me wonder if it's a case of more red herring is.

Interesting analysis. Worth noting that maybe a third of pwME had depression after they relaxed the recruitment criteria. I think they are planning to do a sensitivity analysis with excluding this group. I also gather that depression has a broad signal that correlates with many things...

I think sleep disturbances are in all the main case definitions, and it's one of the four core items for IOM criteria. In DecodeME data, it's close to 100% of people reporting sleep problems. This seems much higher than in other chronic illnesses (at least that don't mainly affect older people )...

I think what many ordinary people have in their minds, much the same as what medics have in their minds, is that if there isn't a clear biological explanation then it must be all in the mind. So ME/CFS is captured by the default assumption, not that people have a specific opinion on it. But if...

Hi Woolie, great to see you again - though I may have missed you previously. That's true - here's one at the top of the tree on Google https://www.nature.com/articles/s41562-024-02076-3 At the same time, research studies are always strongly skewed to higher SES, amongst many things. Yet for 15...

I don't know if the Webinar info on SequenceME and Long Covid has been discussed before. I found it pretty interesting transcript: CHRIS DecodeME is only finding some of the genetics. Sequence ME and Long Covid would find more of the genetics beyond what we've already found and that is...