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I did, although it was pretty brief. It related to my answers to the main questions, where I tried to give an accurate picture of my three broad types of day: Better – could get a shower, or visit a supermarket in my powered wheelchair, or do the laundry, or see a friend for a short time...

I'd like to see the makers of apps that are trying to track Covid-19 make good provision for recording non-typical new symptoms, and encourage people to keep on recording in detail until they are fully back to normal. That would pick up people who recover very slowly, and those who survive it...

Yep. Simply didn't occur to the politicians that by telling people to do this, they're forcing the most vulnerable – those who're chronically ill and elderly, but don't have a support network – to increase hugely their contact with other people, because they rely on public transport to get to...

Well, they're certainly being staggeringly thoughtless. It doesn't seem to have occurred to anyone that telling the nation to order their groceries online might affect the wheelchair users and other disabled people who depend on them. I used to visit supermarkets a handful of times a year –...

Absolutely agree! It's important that the researchers and clinicians meet face-to-face, though, as so much important networking goes on during coffee and meals breaks, and it would take a lot of time out of their schedules if they only met for a couple of hours a day. But if it's all live...

They're pretty good, although it can be just as stressful when part of the system doesn't work quite as it should. My local councillors were brilliant when I had to stop work, sell my house (in which I didn't have much equity), and move into social housing, though. Our council tax is relatively...

Fingers crossed! It does have an antimicrobial in it, but it's one that doesn't cause allergies in many people. ETA: when I get down to the bottom of the bottle and the pump isn't working well any more, I just take it off. I add a bit of water to the cream, swish it around, and then just tip a...

Thank you – I do get this, but don't need overnight care. (I'm also autistic, and would shift flipping mountains if it meant I didn't have to have anyone else in the house! :laugh:) It definitely meets the size standard for a spare room, as the houses on our independent living scheme were only...

Ah, okay – I can't make head nor tail of the award letters they send me! The recent one says they've awarded me a reduction of £989, but nothing about what the actual charge is for the year. A month later I get an email telling me what my monthly direct debit is, but not whether it's over 10...

Oh, that's good news! Mine's gone up, but only by £1 a month, so I can hardly complain. I live on a little social housing development in Band B, though, so I doubt I'd have been hit by a ceiling anyway. I do have to pay the bedroom tax for the tiny spare room where I keep my wheelchairs and...

None of these (including the newly-added one that came from my WGS) appear in my 23andMe data from 2017. ETA: the 'likely benign' rs72657698 does appear, but in my case is not genotyped.

As of a few days ago, there seemed to be plenty of surgical spirit available in the UK – I bought half a litre from Boots for about £4. I wouldn't use it as hand sanitiser, as it's safer for me to just wash them, but as I was in there anyway and my current bottle only has a bit left in it, I...

I only have one showing up on this gene, rs58668703, which is assessed as rare, clinically significant, and pathogenic. However, PXE is a recessive disease and my type's heterozygous, so whilst I might be a carrier, I don't have symptoms.

I haven't seen much written recently about the importance of hand drying, as well as washing. When my elderly mum was in hospital, they were very keen to stress the importance of this – damp hands can apparently spread many times the number of residual bacteria, viruses and spores than...

I received a survey from the Office for National Statistics yesterday, which I've just completed. They send them out fairly regularly, but this one was different in that the majority of the questions were about the epidemic. Most of it was 'no change' for me; I've cancelled one visit to family...

That's how I read it – I don't think they're directly comparing the conditions to each other, just giving a list of examples. Even severe ME is arguably unpredictable, in the sense that we don't know which patients will develop it or when. Some are very ill from the outset; some develop severe...

Me too, I've never heard anyone just say 'pem' to rhyme with 'them'. It'd be very unclear to anyone who wasn't completely keyed-in to discussions about ME, and even some experienced patients would probably struggle to comprehend it as part of a spoken sentence. At least if you spell it out, you...

They've suspended face-to-face assessments for the time being, so your payments should just continue until you're notified of new arrangements.

It'll surprise no-one that significant adverse outcomes can occur, but the severity is really worrying. I wonder whether these reports will affect the FMT research in Norwich.

It'd be so useful to find out what is being taught in medical schools on ME. Not to put the information into the public domain, of course – simply to let Nina know, so that she can factor it into her own education materials. She can probably guess to a large extent what approaches are being...