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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...

I've grown it for decades, I love it – as do bumblebees, as the plants produce a lot of nectar. It rarely needs handling anyway, but it's easy enough to wash your hands afterwards. Quite a lot of the crowfoots are toxic to some degree or other.

There is a gap, though: the issue of teaching the recently-diagnosed patient to go against their own instinct to build up their activity levels gradually in the expectation of eventual recovery, and to ignore the insistence of their family and friends that rest is something you can only safely...

merged thread New article, old story: https://www.theguardian.com/society/2021/may/03/its-terrifying-parents-struggle-to-get-help-for-children-with-long-covid It's good news that Michael Rosen has agreed to be a trustee of the parents' group, though I don't know how aware he is about what...

Thank you for pursuing this so vigorously! Would publication of the finalised NICE guidelines add weight to that complaint? Persuading a regulator to act would be an important moment with potentially far-reaching consequences, so if it would add to the argument, is it worth waiting a few...

I hit this too, though it wasn't that far ahead. As my pension's barely worth having anyway at £90 a month, and all income is deducted pound for pound from my ESA, I decided not to bother arguing! It came into payment when I hit 60. Allowing rest breaks when needed is the only way many people...

Perhaps the biggest thing they could do to enable people with ME to take self-employed work when they can is allow them to step on and off ESA, without being punished for making the effort to work. I was basically forced out of work, because although I could manage part time for several months...