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It would be really interesting to know whether there have been fewer EBV-associated cases during the pandemic. Transmission among young people often occurs in and around secondary and tertiary education settings, and this may have been reduced by closures and social distancing. It would be good...

The above snippet is from @Simon M's participation bias thread, but it isn't really the right one for this. I'm thinking about enabling participation for patients who're severely affected or in a flare during the sample collection phase, but are living without much/any support. Some may really...

I suspect a lot of my middle aged friends wish they did! If eating one chocolate bar or a portion of pudding resulted in painfully swollen glands, hurty muscles, and a hangover, it'd be a lot easier to resist. As it is, it just tends to make them feel tired and gradually gain weight. I...

Just to help my poor non-maths brain, are we talking about two different things? DecodeME is looking for genetic factors associated with ME, but the Norwegian study is looking at a specific aspect of the epidemiology (as in, the population and temporal distribution) of ME/ME onset? I can...

I definitely only developed it when I got ME, and the same goes for some other folk I know. It reliably triggers PEM, and it isn't the result of a dietary excess or underlying diabetes. A slice of cake can be enough. In common with activity, it depends how my ME is generally. If I'm having a...

To be fair, if you happen to be one of those who reacts to it, it does quickly become obvious that it's caused by refined sugar. I found, right from the outset, that it triggers nearly as much PEM as exercise, complete with swollen glands and the whole caboodle. Repeated consumption of high GI...

Mine was 'nitwit'. Presumably means that, linguistically, I'm still seven years old?

I also seem to be a responder (I got little or no PEM when taking it), but the problem here in the UK is that people wouldn't get any monitoring via an NHS doctor. I think this is important when taking medication, which is why I haven't done a longer trial of DCA. It partly depends on the...

We'd probably be best starting from the first occurrence of recognisable ME, wouldn't we? It is thought to have a relapsing/remitting pattern in some people, and presumably those of us who've had lengthy remissions but then developed symptoms again still had the underlying vulnerability. As...

Hopefully that will go well. I can't see them doing it by video, really! I'll probably struggle too if prescribed, as I have severe psoriatic arthritis in my hands and numerous joints are completely fused. But I'll cross that bridge later; to begin with I'm hoping just to get a diagnosis, so...

Mine was similarly complicated, covering a period of several years. My family noticed that my stamina wasn't the same after measles, but I'm fairly sure I didn't have diagnosable ME then; even the onset of a clear ME pattern after exposure to EBV took several months. But if we take it from the...

Well, 30 years after starting to accumulate the painful lipomas that my grandmother and aunt had, and 10 years after developing painful fat on my legs, I finally decided to broach it with a doctor yesterday. Mainly because I need some proper compression garments to help me sleep, rather than...

It would be easy enough to do a members' poll on best-guess-at-year-of-onset, wouldn't it? Even if the software wouldn't allow a list of 50+ options, we could start by sorting people into decades. A simple sudden vs gradual onset option might also be useful, as well as an indication of whether...

It really isn't. Advertising stopped propping up newspapers a long time ago; even when I worked in the industry years ago, it was only usually a subsidiary income stream for titles with a cover price. A good chunk of the Guardian's funding still comes from the historic trust, but they've also...

I notice that Mrs Trellis of North Wales* has conspicuously not been featured yet. This alone is grounds for complaint, as she is clearly being silenced. *May only make sense to fans of I'm Sorry I Haven't A Clue.

If people think this is useful information, I wonder if year of onset, age at onset, year of diagnosis, and age at diagnosis questions could be part of DecodeME – if it isn't already?

That is staggering. It deserves to be retweeted widely!

Not judging by someone I worked with for years – at least on the strength front. When she started the workplace yoga sessions, she was 64 and had the physique of an elite distance runner, but did no training except yoga and walking her dogs. She had an extraordinary sense of balance, such as...

I don't think it has anything to do with medicine per se. Just the aspects of it that are tied up in academic empire building, financial self-interest, and small-state politics. People who're interested in medicine as a scientific discipline are probably able to spot the gaping voids in the...

I've never had anything that severe. I have involuntary muscle tension, which is worse in the cold. Because I can't fully release my thigh muscles voluntarily, I get pain from 'overusing' them, even though I'm sitting down and relaxed. It's a low-level tension, though, which can be released...