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It is an interesting question. To me, though, the term relapse clearly implies a continuation of an illness. If we're only looking back in time, we know whether or not the person who experienced a remission became ill again; and if they did, it suggests that they had ME throughout. I'm not sure...

Some really quick responses in note form (sorry, I have to go out) to @Peter Trewhitt's useful list: I'd add pregnancy/childbirth to the lists of possible events. Some of the terms (e.g. cardiovascular or neurological event) might need a bit of explanation. I'm not sure about the term total...

This is an important point, especially for people whose onset wasn't clear. I associate mine with EBV because I was definitely exposed to it by my boyfriend, but I didn't begin to develop ME symptoms until five or six months later. This being the 70s, no tests for EBV were done even on the...

It is annoying, but in this case it might just be that it's easier to explain it that way in a news article?

Especially as you can no longer rely so much on the solution they had in the 70s: handing out a prescription for extremely addictive tranquillisers, which kept people quiet beautifully, some of them for decades.

True! This is why the research perhaps ought to be done separately. If evaluated protocols using inexpensive technology are available to researchers doing small studies, there's little reason not to co-opt them, especially if the only alternative is subjective self-report. Previously tested...

It's a great idea in theory, but I couldn't manage that when I was really ill. I was only mild/moderate, too. I couldn't even sit up for more than a few seconds, only prop myself up on pillows, so food had to be prepared and eaten in bed. I used to chill milk and butter in a little beer fridge...

100% agree. It would be good, though, to have validation from people who know what they're doing when it comes to actimetry. Otherwise, researchers working on drug candidates – who might be familiar with analysing biological samples, but know little about monitoring activity – are likely to be...

Yes, possibly! The question was prompted by the thought that it might be possible to extract more useful information than we realise from easy-to-gather data such as heart rate variations. If it hasn't already been done, I'd like to see some work on this – and any other useful data collection...

I've just looked at the thread about @Simon M's excellent new blog article: and read @FMMM1's comment: It strikes me that if we are going to measure improvements in function following interventions, we need to think now about ways to establish baselines. I've worn a Fitbit for the last two...

Do they keep long, @lunarainbows? I hopefully won't need them so much now I'm not killing myself trying to work, but part of the problem was always that the crashes were often associated with viruses, so they were impossible to plan for. I might go a year or more without a really bad one, and...

Thread split from NICE ME/CFS guideline - draft published for consultation - 10th November 2020 This is a really important subject, which isn't addressed nearly often enough. If you live on your own it's incredibly difficult, specially as you don't have the energy to socialise. Diabetes...

I had my second AZ vaccine on Sunday. The first injection made me feel better than I have for years, especially cognitively. I've had a good cognitive improvement with this one too, though not as strong an effect as last time. There's also an improvement in overall energy, though again weaker...

If you open up your 23andMe raw data as a text file, you can just search for an rs number. A relative decided to do ours a few years ago. The rest of us hadn't a clue what the point was, to be honest! – but I thought I'd open it up to take a screenshot for you:

Just on the IDO2 mutations: I remember reading that at least some of the mutations show up in 23andME and WGS results, and that Dr Phair has published the rs codes of the SNPs he identified. They should be easy enough for patients to pick up themselves, as long as the orientation is made clear...

The only intervention I've ever had is a nurse informing me that redheads have trouble absorbing enough vitamin D, but their bodies can actually make it. I've no idea whether that's medical fact, or something she read in the People's Friend whilst waiting for her appointment at the dentist's...

You can't ingest it without touching it. Toxins aren't going to get through rubber gardening gloves, either. I planted mine when I moved here three years ago and haven't handled it since; in my last garden, I probably last broke up the clump to give some to my neighbour about 10 years...

Doctors could help by being realistic about recovery times for post-viral illness. When a friend was diagnosed with breast cancer, she was told that she'd be off work for a year. It might be as long as 18 months if she needed follow-up surgery, but a year was probably the best indication to give...

You'd have to be ingesting it, though, in order to get a dose in the first place – there's no chance of a cumulative effect if you don't. People know to wear gloves and wash their hands after gardening, as there are toxins in everything from rhododendrons, to daffodils, to laburnum, to...

Apart from the fact that a lot of expectations have been raised by the talk of long Covid services (people will obviously expect tests or treatment if they've been referred to a specialist clinic), it's probably not only the patients who're behind this. Employers, schools, and colleges are not...