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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.

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.