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this is a little complex to interpret. During the early space programme both NASA and Russia did extreme bed rest studies on earth on healthy volunteers as a proxy for deconditioning in space. They also studied astronauts when they returned from space. These were all very small studies as they...

as I said in my previous post, rare variants are not usually like genetic diseases. I think there are rare variants that increase the risk by 30%, but that's a far cry from causing disease. The poster child for rare variants is the APOE epslion-4 variant, discovered in one of the first GWAS ...

25% misdiagnosis rate in NIH intramural study @Milo it's worth noting that the NIH only studied people with a post-infectious onset. I wouldn't be surprised if the misdiagnosis rate was very much higher for people with a gradual onset. But I'm not aware of any data on that. I'm pretty sure that...

From DNA to drug development How studies like DecodeME lead to progress in diseases – five success stories How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes? One way scientists can now look for answers is with very large DNA studies...

Happily, the NIH in house study is already making a good start on this. They have probably the most sophisticated diagnostic setup in the world and I'm fairly sure it includes whole genome sequencing. But I think their misdiagnosis rate is around 25%. So most remain with an ME/CFS diagnosis...

Thanks. @Snow Leopard I think I'm being a bit dim here — what, exactly, is the common purpose? I suspect most of us are not is up as you are on exercise muscle/fatigue/neurological stuff. but do we actually know that? One of the links goes to a study with just 16 fibromyalgia patients and I am...

That's very interesting. How do we know this, and does this apply a common pathology to fatiguing disorders?

part 2, some issues So far so good. However, given that the finding isn't specific to ME/CFS, there is a question as to its significance and I think there has been a little overreach here. The title says "hand grip strength and fatigability: correlation with clinical parameters and diagnostic...

Commentary: strong on objective measurement of fatigability, other claims are weak What I like about this is that it builds on previous work and the proven, reproducible Handgrip Strength test (HGS) to develop a broad measure of muscle fatigability. As opposed to the subjective experience of...

What does this tell us? Hold on there! This is a second study with n=9 and using an old-generation "noisy" tracer as a proxy of inflammation. We can surely safely conclude nothing either way. Pleny of neuoimagers (such as Chris Chambers) think the whole field struggles because there is so much...

I think this is the central journalistic flaw and why it was a fundamentally biased piece. Of course, case studies and interviews are a really powerful way to communicate. But if you're going to tackle controversial area you need a case study from both sides. Instead they started with Paul...

Merged thread. Ten minute segment on Newnight looking at the 'controversy' over how to treat LC and ME/CFS, but isn't very balanced and gives the impression (by focusing on the opinion of medics, not evidence) that patients just need to exercise and tackle their fears. Starts at 31 mins...

How many have long covid? And how many have something with symptoms as severe as mecfs? Yes, seems to be a lot less than you'd expect for glandular fever, I think that typically around 10% with GF meet CFS criteria at six months? However, there is a major caveat. Like a lot of "Long Covid"...

The ONS survey asked about impact on daily activities: no impact, limited a little or limited a lot. Only one in five of the 14% of people who had at least one symptom at 12 weeks (which gave the headline figure) said the daily activities were limited a lot. So, that works out at 3% of people...

worth bearing in mind that Action for ME is a partner in the DecodeME study its chief executive, Sonya Chowdhury, is chair of the study's management committee and played a huge part in making the study come about, as well as in setting it up. I don't think there is any need to worry about a...

Very interesting difference in sex ratio between hospitalised and non-hospitalised cases: — hospitalised: 41% women. — Non-hospitalised: 86% women. These were different studies, so it's not a direct comparison. But the results aren't that surprising, since men are more likely to have severe...

Split from The course of the illness for ME patients in Norway, 2021, Schei and Angelsen The potential effect of sample biases on DecodeME Summary: there is some evidence that this could be a problem, but is not clear how big a problem and it may be possible to adjust for possible biases...

looking at the graph, it's 2015 before we could be confident there is a decline, rather than simply a plateau, and the survey was done in 2019. The decline could be both a delay in getting diagnosis and also taking a while to get interested in research: that's way above my pay grade :). But...

Long covid estimate of 9% max assuming I have understood the method right, this was a fairly comprehensive and unbiased original sample. Which means this could be giving us a decent estimate of the rates of long Covid; this implies a rate of only 9% at six weeks, which is lower than quite a few...